Mayzoo

The supplement would depend on the specific symptom. I give Lemon Balm to reduce nightmares, mild OCD, and anxiety. For her vocal tic, I give IBU or tylenol (not sure why tylenol works, but it seems to work well). Sometimes her vocal tic is related to slightly elevated fever, but not usually. For crying jags, I give hugs, a wet paper towel, soothing words and sometimes a benadryl. For severe hyperactivity, I give a benadryl, melatonin, or a "sleep relax" (http://www.amazon.com/Natural-Factors-Sleep-Capsules-90-Count/dp/B00028P81Q/ref=sr_1_1?ie=UTF8&qid=1368640797&sr=8-1&keywords=sleep+relax) capsule if we are not at home. For severe sound sensitivity I usually give a benadryl and if that is not enough, I give a lemon balm or sleep relax capsule as well. At home, I usually ride it out. We do play therapy with stuffed animals to try to work out certain issues.

We paid the $99.00 to get the 23andme test run. We do not have the results yet. I am research nut, and I am frustrated always behind the 8 ball with her diagnosis'. I miss symptoms that are related to conditions that I am unaware she has. If I have an idea what she is predisposed to, I can research those conditions and maybe I will not miss the early symptoms so we can get treatment faster. Also, I have been told you can tell that some supplements will help or will not (not absolute, but a good guide) help based on the testing. I already have found she has the A1298C mutation, and that may explain the strawberry tongue she has. With supplementation, I can figure out if the tongue issue is methyl related or something else.

Doryx, brand name, is a delayed release capsule OR tablet form of doxycycline. http://www.drugs.com/cdi/doryx-delayed-release-capsules.html and tablets: http://www.drugs.com/cdi/doryx-delayed-release-tablets.html. Crushing brand name doryx tablets would affect their delay release capacity. However, they can safely be "broken up" : http://www.drugs.com/dosage/doryx.html "Sprinkling the tablet over applesauce DORYX Tablets may also be administered by carefully breaking up the tablet and sprinkling the tablet contents (delayed-release pellets) on a spoonful of applesauce. The delayed-release pellets must not be crushed or damaged when breaking up the tablet. Any loss of pellets in the transfer would prevent using the dose. The applesauce/DORYX mixture should be swallowed immediately without chewing and may be followed by a glass of water if desired " On a side note there are patient assistance cards and coupons for brand name Dorxy if this helps anyone: http://www.patientassistance.com/B2115-doryx.html and https://www.activatethecard.com/doryx6297/. Every little bit helps. Doxycycline tablets can be crushed, but it is discouraged since it can be harsh on the esophageal lining: http://www.drugs.com/answers/can-doxycycline-hyclate-be-crushed-and-then-added-270211.html. You can crush them and put them in a capsule.

I have regular, moderate OCD. Not related to any infections that I am aware of, and I have had intrusive thoughts since I was in my early teens. I did not even know this was an OCD symptom until I had to research this stuff for my kiddos sudden OCD/PANS. Oddly, I will leave no rock unturned when it comes to research for her symptoms, but I do not have the time or inclination to research for myself usually. What I have found that helps me is a low dose of an SSRI every morning and when I need it to sleep, I take melatonin and lemon balm if I am having racing thoughts prior to laying down.

Yes, that is the same type of product. It is Bio-enhanced curcumin. Your dose is rather low is all I can say. Most folks go with 600mg twice a day, and some go higher. You are giving 350mg twice a day. If you increase the dose, do so slowly. Increase by one- half or one capsule in the morning for a week or more and if it does not cause issues, then increase the evening dose by the same and continue increasing until you reach a dose that you and the LLMD are pleased with the results. You can also keep checking his yeast levels as you go along to see if you are seeing improvements. Here is a link to google scholar articles about yeast and curcumin: http://scholar.google.com/scholar?hl=en&q=curcumin+%2B+yeast&btnG=&as_sdt=1%2C44&as_sdtp=

I am going to copy and paste this from your other thread: My daughter is taking the cheaper version of Enhansa for yeast overgrowth (candida). Here is a link: http://leesilsby.com/enhansa-homepage We take what is called BCM-95, which appears to be the same thing as Enhansa but less expensive. Almost all of these on this page are Bio-enhanced. You just have to read it. Curcumin 95 is not necessarily bio-enhanced: http://www.amazon.co...keywords=BCM-95

My daughter is taking the cheaper version of Enhansa for yeast overgrowth (candida). Here is a link: http://leesilsby.com/enhansa-homepage We take what is called BCM-95, which appears to be the same thing as Enhansa but less expensive. Almost all of these on this page are Bio-enhanced. You just have to read it. Curcumin 95 is not necessarily bio-enhanced: http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=BCM-95

The uncontrollable laughing coupled with sleep difficulties sounds like it could be yeast overgrowth in the gut, which is common with long term antibiotics. We are having bouts of inappropriate laughter again right now too. There are several ways to access yeast. Check with your LLMD on this one. Odds are he has numerous things going on right now, like most of our kids. I attempt to tackle one major hurdle at a time, and attempt to add/remove one supplement/medication at a time so I have a good idea what is working and what is not. Sometimes overcoming one major hurdle either causes or uncovers another major hurdle I was previously unaware of. Still, for every hurdle overcome is like winning a battle in the war. Also, keeping a running log of medication, supplements, and behaviours is vital to the care of these kids/young adults. Sometimes you do not know what is going is on until you review the log. For example, I started my kiddo on B-6. Then, very slowly over a two week time period her she started exhibiting autistic behaviours we had never seen from her before. Three weeks after beginning the b-6, I started reviewing the log and realized the addition of that supplement was right in line with the addition of these current symptoms. With a google search I found b-6 helps autistic behaviours unless a child is receiving too much, then it aggravates autistic behaviours. So, under the assumption she was getting too much, I removed it completely for the time, and she is slowly losing these new behaviours. I will likely add in again later at a lower dose and watch closely. Without the log, I would have to wrack my brain to attempt to remember what had changed around that time. After a while, everything runs together and singling out a particular event that may have triggered another event becomes almost impossible without a log. We took our kiddo to a PANDAS friendly immunologist and she is being evaluated for numerous conditions that we may have been overlooked up until now since so many of the symptoms are overlapping on many of these conditions. This is what our log looks like: 10/20/12 Pedi SX Major regression of SX DX PANDAS TX Keflex 500mg QAM Zithromax 250 mg ½ QPM prednisone 20mg X2 days then titrate down as directed. 02/05/13 ENT SX Review medical HX for T & A DX Chronic Tonsilitis TX Bi-lateral T & A 02/20/13 ENT Bi-lateral T & A surgery 02/28/13 LAB DX Tonsils cultured actinomyces bacteria ENT TX DC Keflex and give Amoxicillin X10days then restart Keflex. I declined to stop keflex and opted out of amoxicillin. Made Appt with Dr Rao

I requested the CPT codes for the tests, and they have not gotten back to me yet. With the codes I will find out how much the insurance will pay. I found out for the 255.00 urine test the insurance will reimburse 19.40. The lab is out of network and not held to MAC costs, so they charge a whole lot more than an in network lab can. My concern is the Cunningham test will be the same way, but I will not know until they respond with the cpt codes. I am unsure if we are going with IVIG or not yet. I have many medical concerns about it. If we did, I would try to get it done in-network.

My daughter's doc both mentioned it, and drew an extra vial of blood for when the test became available. I was excited about the possibility of this test; however, at a $925.00, we simply cannot afford this test, and I would suspect many are in the same boat. We have already done almost $1000.00 worth of blood and urine tests and we are not done yet with all the tests that must be run. Our daughter has been diagnosed unequivocally by clinical symptoms, so the test in our case, is unnecessary anyway.

A lab has come out to take blood from hubby for a life insurance plan we bought. The lab took care of the whole thing, so I do not know what they did with the blood.

We use BCM-95, which is Bio-enhanced curcumin 95. So far as I can tell, it is the same as Enhansa, but much less expensive. Then there is the plain non-bioenhanced curcumin. It is not as well absorbed, nor does it remain in the blood stream as long. Enhansa and BCM-95 both state they are absorbed at a rate of 7 or 8 times greater than plain curcumin. BCM-95 comes in several different brand names and strengths.

I was going to ask this as well, but the answer may be in this link: http://www.ncbi.nlm.nih.gov/sites/ga?disorder=PANDAS I have not read the whole thing or found the answer yet, but which ever of us finds it first, we can post back here . Ehh, nevermind. I did not find the answer there, but feel free to see if I missed it.

I did find this blurb on another web site, so maybe the results can be extrapolated into other diagnosis. It is late and I am tired, sorry. I will have to do more research later when the fog of this day clears: "“The collective results of the panel of 5 tests will provide an assessment as to the anti-neuronal and autoimmune state of the patient at the time of testing. The physician is provided a composite report containing the 5 assay results, each compared to normal controls. The collective results can aid the physician in determining a proper diagnosis and support the appropriate treatment decision.” http://pandasnetwork.org/2013/04/moleculera-labs-opens/

My kiddo is not on it, but here is a pretty good thread about it: http://www.latitudes.org/forums/index.php?showtopic=19670&hl=amantadine

You could get a different recommendation from every person who is on this board, but here is mine. Go to an immunologist that "believes in" the diagnosis of PANDAS. They will test for numerous conditions both related to PANDAS, and those unrelated. If you find other co-infections such as lyme etc, you can then go to an LLMD as well. We are going to have to add a nephrologist to our team of docs, but I am hoping the Immunologist can treat the major symptoms we see with kiddo. We are seeing Dr. Rao in Texas, but we have only had one appt, so I am not sure how great he is, but many people recommended him to us prior to our going to see him. He is now listed as a PANDAS specialist as well. He has not made a plan to treat yet since we were waiting on lab results. You can call a doc and ask them their approach to handling a case involving PANDAS instead of jumping from office visit to visit. This will give you valuable information prior to the appt. that may save you valuable time and money. There is a website that I lost the addy too, but it has a list of docs. I will find it and post a link here. Here is the link for finding a doc on board with PANDAS: http://pandasnetwork.org/resources-new-research/providers/ No matter the doc you go to, if you do not already, start a log that lists ALL symptoms and what seems to make them better or worse. I started a medical log that looks like a doctor's chart so it is easy to read and takes up little space. They are more likely to read this than a paragraph as well. Get a copy of all tests run, and keep them for later reference. Here is a bit of the log I started for kiddo in case you are interested: 03/18/13 Mom SX low grade fever, vocal tic and emotional liability slow regression TX Zithromax 250 mg ½ QAM—Keflex 500mg PM QOD 03/29/13 Mom TX DC Cherry/OLE. Add BCM-95 200mg and titrate up slowly 04/01/13 Mom SX Woke with 100 deg Temp, vocal tic, feeling poorly DX Die off/herxing? TX Add Charcol between other meds, APAP if needed 04/04/13 Immu SX First Appt to persue improvements DX Autism, PANS TX Blood work, Urine tests, continue ABX as is until results

It may be a herxing reaction. When a med kills off bacteria or yeast, sometimes the release of toxins can lead to a reaction much like what you are trying to solve. Here is an article on it: http://en.wikipedia.org/wiki/Herx

Norcalmom "Does anyone know what the break points are for the 3 categories? Also - with the result, what else do they say - like does it say that there may be other conditions that are know to raise the numbers? (Lyme)? Active Strep infection ?" Results example with ranges (http://www.moleculera.com/testing/): Dopamine D1 Dopamine D2 Lysoganglioside Tubulin CaM KinaseII Patient Result 1:4,000 1:20,000 1:1,000 1:10,000 65 Controls 0 to 1:2,000 0 to 1:8,000 0 to 1:200 0 to 1:1,000 1-35 Here is a sample report, and there is no mention of other conditions that I saw: http://www.moleculera.com/wp-content/uploads/2013/03/Moleculera-Report_Version-04.11.131.pdf

We saw a PANDAS expert who is an immunologist and he ran a battery of blood and urine tests so we could know if we were missing anything. In our case, we were missing quite a few things. I will list her tests run in case you we want to research them and push for any of them. Keep in mind our daughter also has autism, so some of the tests are to keep us informed about her status there, but they seem to cross over well for PANDAS. All the tests were beneficial to me anyway. If I am reading her results right, I learned her immune system was fine up until 18 mo but it tanked before 6 years old. Blood tests TSH + Free T4 CBC with differential/platelet Complete Metabolic Panel Iron and TIBC Immunoglobulins A/E/G/M Chlamydia pneumonia IgG/M (not the STD chlamydia) MTHFR mutation Mycoplasma Pneu IgG/IgM Rubella Antibodies Cytomegalovirus Calcitriol Vitamin D level Varicella-zoster IgG EBV Ab VCA Anti-Dnase Mumps antibodies Rubeola antibodies Poliovirus antibodies HHV 6 Herpes Simplesx Virus Tetanus Antitoxoid Diptheria Antitoxoid Celiac Ped screen Homocysteine Magnesium Ceruplasmin Copper Zinc Ferritin Lactic Acid, Plasma Streptozyme Antistreptolysin Ammonia Triiodothyronine Selenium Coxsackie virus A/B (he forgot this one, but he meant to test for it) Urine tests OATS test (an accurate evaluation of intestinal yeast and bacteria) Casien/Gluten tolerance test Neurotransmitter test Porphyrins tests (help identify the severity of heavy metal toxicity or organic chemical exposure in patients) And we decided to perform the 23andme test for our kiddo since I feel like I am being blind sided by diagnosis that are critical to her health and life; for example, we learned she has kidney disease with this battery of tests, and I was completely unaware up until now. I am hoping this test will help us if we need watch for possible other diagnosis', to be alert for symptoms I may have otherwise missed (IE she has been pale for a year and I was not sure why), and it will help to get a handle on her supplements (I hope). Good luck and keep researching and pushing until your gut tells you that you have a handle on the situation. My gut told me something else was still going on, and I am very glad I listened to it.

Here is what the site says about the test results: The values from these five assays performed in duplicate and triplicate, are reported in the Patient Profile Report compared with a normal control range. Assay test values above the normal range are reported. An integrated summary of the results is reported as a relative “risk” of PANDAS/PANS scale based on the group of test values compared to normal ranges and means. The relative risk scale includes the designation of: PANDAS/PANS NOT LIKELY PANDAS/PANS LIKELY PANDAS/PANS HIGHLY LIKELY PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. http://www.moleculera.com/testing/

My kiddo has had for some time maybe 30 (varies) slightly swollen and red taste buds. They are not the white very swollen individual (infected/burned or traumatized) taste buds that can happen. Does anyone ele's kiddo have this?

What is her trigger and has she been exposed to that? My daughter can be going along quite well until she becomes exposed to an infection and all heck breaks out behaviourally and compulsary wise. She does not have physical symptoms of illness, but the PANDAS symptoms are quite obvious.

We will try to get to it some day, but many other tests and treatments will take priority over this one for quite a while.

Everyone should call the lab to see if they qualify for aid, and their insurance companies for reimbursement amounts. To call your insurance company, you need the CPT codes and unit values the lab will use. Doing this, you will know exactly how much you will be out of pocket. According to the Cunningham site, whatever the insurance does not pay, they will bill to the patient. We pay the 425.00 up front and if the insurance pays nothing we will be billed for the remaining 500.00. Since they are out of network for probaly everyone, they are not bound by any Maximum Allowable Costs (MAC) or contracts. They may charge whatever they feel is appropriate, and the patient is responsible for everything the insurance does not cover since they agreed to the test. My insurance has never yet allowed more than 5.50 for any one blood test CPT code (50ish done so far), so if that trend holds, they would allow about 27.50 for the Cunningham test, and I would be reimburssed 16.50. I would however owe 908.50 total for the tests. I will know more when the Cunningham lab gets back to me with the CPT codes and unit values. "Unfortunately, we are unable to file government issued insurance such as Medicaid, Tricare, etc. The full cost of the 5 assays and physician results is $925. If your insurance provider pays the full $925, we will refund your entire deposit. If your insurance pays more than $500 of the costs, we will reimburse any amount over $500, up to your full $425 deposit. If your insurance does not pay, or pays less than the difference between your deposit and the cost, we will send you a billing statement for the difference. We understand that some parents may be in dire financial need, and to that end, we will work on a case-by-case basis to provide testing for your children." http://www.moleculera.com/patients/ They do indicate they have some program to aid patients who cannot afford the test, but for US, we never seem to qualify for any assistance. Last time we tried to get any help (not from this lab), we were told to sell our house, use the money to buy lottery tickets so it was just gone, and then get a divorce. Then we MIGHT qualify for some assistance. I hope it helps some people, but I am too cynical to believe there is a chance it would help us since we refuse to throw what we do have away and get a divorce merely to qualify for limited, and restrictive aid.

In our case anyway, we have other known conditions, IE autism, that we needed to run some tests for as well. Not all her tests were for are for PANDAS. We also strongly suspected that she had PI, but we needed the blood work to back that up. As it turns out, we found out she has some kind of kidney disease that was not even on my radar and I doubt it was on the docs since he never discussed this at all, so that was a good thing we discovered since the sooner you treat this, the better off the child will be. I have seen Autistic kids get better by being treated for PANS (including my own son...social skills jumped 7 years overnight with IVIG). Also, what is the kidney disease, because strep can cause glomerulonephritis (which is a kidney disease caused by strep). In our case anyway, we have other known conditions, IE autism, that we needed to run some tests for as well. Not all her tests were for are for PANDAS. We also strongly suspected that she had PI, but we needed the blood work to back that up. As it turns out, we found out she has some kind of kidney disease that was not even on my radar and I doubt it was on the docs since he never discussed this at all, so that was a good thing we discovered since the sooner you treat this, the better off the child will be. I have seen Autistic kids get better by being treated for PANS (including my own son...social skills jumped 7 years overnight with IVIG). Also, what is the kidney disease, because strep can cause glomerulonephritis (which is a kidney disease caused by strep). We do not know what the kidney disease is yet, how severe it is, or what is causing it....YET. I just got the results that confirm a problem about 10 days ago. I did four days of reagent strip testing, and now a nephrologist is reviewing her test results to let me know what they think and if we need to see them or a urologist. The doc that did the tests has still not called us back yet to discuss the results, but they say he was sick for 2 1/2 weeks after he saw us, so he is backloged a lot.