Mustang Carole

HI, My son had a few pet scans under neuroresearch, he was lightly sedated. He was also off all meds for 3 weeks previous to having scan done. Hope this helps.

HI, Internet yahoo news clip about family cannot afford medical care for child with dx Conversion Disorder Symptoms, tics, ocd, etc http://abcnews.go.com/Health/medical-bills-bankrupt-families-children-mentally-ill/story?id=18515291

HI, An OLD trick that my mother used was to crush the pills, mix with jelly, can also mix with applesauce even flavor the applesauce with cinnamon, add apples to give it a crunchy texture, all help with the intake of meds. Carole

HI, New neighbor retired, female friend in need of Lyme dr, can anyone recommend a physician in Sarasota, Venice area? Dr can be MD, DO, Immunologist, whoever can treat ...!!! Thanks so much! Mustang Carole

Hi Everyone, I need a Pandas friendly doctor...no peds...can do internist, family physician, md, do, naturopath, or holistic, and insurance accepted too is very nice...in the Sarasota, Fl area. Patient is young man early 20's history of severe pandas, needs occ. antibiotics for ear infections, flares. Thanks in advance for any responses. Mustang Carole

HI, I use a teaspoon in my coffee everyday, it helps detox and if you take more.. it is like taking drano. You will get cleaned out fast, can cause some gas and stomach cramps. Plan to stay home that morning. haha. Carole

HI, I attended a local Tourette Conferences put on by our Tourette Syndrome Support Group and hosted by Dr Harry Chugani, Chief of Pedi Neurology. Dr Singer was the main presenter. He knows his tourettes, and advocated for lots of drugs. He DOES NOT believe in PANDAS at all!!! So, do not expect any thing for pandas, just tourettes, movement disorders. Mustang Carole/Michigan

HI Listmates: Michigan members...Heads up..there is a T.S.conference being planned so save the date more information will be coming. Eastern MI University, May 13, and 14th. The 13th will be a Grand Rounds for physicians and the 14th is geared toward parents. Will be interesting to see if any pandas info is shared with the medical professionals, stay tuned and will let you know. Mustang Carole

HI Listmates: Michigan members...Heads up..there is a T.S.conference being planned so save the date more information will be coming. Eastern MI University, May 13, and 14th. The 13th will be a Grand Rounds for physicians and the 14th is geared toward parents. Mustang Carole

HI, Becauuse your daughter is older, I am wondering if she may have the same problem that we are having here. My son has wisdom teeth that are half in and half out, according to the dentist who says that even he has trouble reaching down in there to clean during his semiannual checkup and cleaning. This a wonderful media for the streps to grow, thus your title of being a strep carrier. We were advised to get all wisdoms removed asap. I plan to ask our dr for antibiotics to take before, during and after procedure. Maybe this is a source of her strep, might be worth getting it checked out at next dental visit. I hope she gets well soon, she has been through enough and deserves some peace, and you too! Hope for healing, Mustang Carole

HI, For severe OCD, start the Inositrol, go low in dosage and slowly work your way upward. My son asks for it when he starts the hand washing cycle, says it helps him. Try the baking soda or epsom salt baths at night, throw in about 2 cups per tub full should do it. Have you tried the olive leaf extract, etc. route? Hopefully, you are seeing results of resent infection, or exposure to strep and will clear on its own as immune system clears and heals itself in time. Keep us updated and good luck. I think all the families are experiencing increase in symptoms as the winter drags on, but will get better soon...spring is on the way, sunshine and healings. Carole

HI Back, The conference doctors talked about what SS posted above, that the US genetic changes of our food has increase in the gluten by a fair percentagel in comparison to pioneer days, when wheat was more pure,no pesticides, grown in healthy soil. No wonder there is an ongoing problem with increase in bowel problems, digestion, and our health in general. SmartyJones..They talked about the diet of gluten free and casein free together. There is no rule how long to stay on it, but in general over time..a few years until the KIDS mature and heal, you can try adding it back in slowly with probable tolerance due to restoration of normalcy. My son has been on the diet of both since 2003 when experiencing the depths of the horror of PANDAS way beyond Sammy. I took him off casein free 2009, which he can tolerate now. He is gluten free most of the time at home, infractions occur when on trips, dinners out, pizza at special olympic parties cause irritibility, so I tighten up the diet and use variety of enzymes, esp. with DPPIV ingredient. There is no family history of gluten or casein intolerance, or celiac disease in immediate family. Hope this helps. Mustang Carole

HI, I just attended our local Michigan autism conference presented by Health Dimensions Compounding Pharmacy. All 6 physicians that presented different topics hit on a main theme, that GLUTEN FREE diet is imperative to start helping clean the sick gut to help the kids with impaired immune systems. These are pediatric drs, family medicine drs, holistic drs with osteopathic and standard medical degrees and more. Just my 2 cents. Mustang Carole

HI, My friend caught this one...tune in when you have some time... http://thedianerehmshow.org/shows/2010-12-27/molly-caldwell-crosby-asleep-rebroadcast click on listen. Sleeping sickness caused by an unknown flu back in 1918, caused symptoms of parkinsons in adults, and movement disorders in children. The grownth stunt in the frontal lobe caused psych changes in the kids. Autopsy would show basal ganglia and midbrain swelling. Among early signs were eye tics, graduating to difficulty keeping eyes open, eyes rolling back into head..leading to Oculargytic Crisis. This rang a bell since my son had the blephoraspasms for 3 years when in severe pandas crisis mode while on and off a slew of meds. After main speaker does her presenting, some call ins were pandas related. A hand full of researchers one in US and a few in UK are presently working on this disease...maybe there is a connection. I would bet money on a big Yes. Anyone else? Mustang Carole

HI, Ask your dr to run a stool test for yeast. Rx with probiotics starting NOW, rotate various brands, give 2 hrs before or after your antibiotic, give Keifer for a snack, all help repopulate the gut with good bacteria. Keifer is found at Better Health or Whole Foods milk section, or can make your own..google for same. Yeast behavior... Libary book...Feast without Yeast. M.C,

Hi, GREAT Topic!!! I remember the Bad days too well. YOU are not alone! I love love love the hitting rocks idea from Sadie 10 ! What a creative idea! This redirects the energy pent up to a physical action to help get rid of the tension and action can be shared with by parents or sib, too. When my son was very sick with pandas, we bought him a drum set but put it into the basement rec room, so he could let loose and bang away to the sounds of heavy metal rock. This redirected energy into music actually got him interested in taking guitar lessons, now he has three. He also now uses his ipod to play music at the clinic for check ups..he hates seeing drs...esp after seeing so many when he was desparately ill. Meanwhile, give the hugs and tell them that you love them , and know in your heart that they will get better in time and you will get them back someday!! Hope for healing, Mustang Carole

HI, Dr. Michael P. Montico is Family Practice and Sports Medicine Providence Park Hospital and office in Milford, Michigan google for more info. He is a great guy! Mustang Carole

Hi Listmates, Just a suggestion for some who need to contact there doctor ASAP, simply ask your physician for a personal contact number (cell, home, whatever) in case of an emergency. Promise him/her that you will NOT abuse or USE it unless absolutely necessary. You need a back up plan and this is it! My holistic doctor actually offered me his cell phone number. I never abused it and only called him after he called me to ask how my son was doing. He is a very compassionate, wonderful human being indeed, and he has been with us threw it all and continues with maintainence to better health. Hope this might help. Been there and done that. Mustang Carole

Hi, Whoever gets to go to the conference, please take notes to share on this forum anything new or exciting is welcome! Mustang Carole

HI Folks, This is an article written by a Mom, who is also a health care professional anesthesia nurse, and has a child with a disablity...she is concerned effects of anasethesia on kids with immune problems and detoxing... LONG, take time to read. http://autism.com/fam_AnesthesiaandtheAutisticchild.asp Mustang Carole

HI, Contact Judith Anderson, M.D. at Detroit Medical Center, Harper Hospital part of Detroit Children's Hospital, .....the specialized phareses unit has about 10 beds, this is all the nurses do 24/7. Location is center of Detroit. Ronald McDonald house on site for special rates for families to stay overnight, etc. Mustang Carole

Hi Coco, You, family and daughter have gone thru enough already, and do not need school to make all your lives miserable. Good move getting your daughter homeschooling...your dr can write a perscription that you present to the director of school board and send also to the head of your state school representative stating that your child needs extended home schooling. Thee should all be copied and presented at your iep...GET an ADVOCATE !!! Ours was only about $15/hr and I gave her some bonuses over the years. Go to Wright's Law.com. This lawyer is all for our kids and is a genius. If he comes to your home state, attend his lecture, worth every penny and you get books and hand outs....he teaches you to be an advocate for your kids! Hope this helps...we had our son homeschooled for 3 yrs until he has phareses , healed and back in school. Mustang Carole

HI Gayle, Can you try giving him digestive enzymes to help digest the foods and vits that might be irritating his GI system. The gluten free diet is very helpful but start it slowly not all at once or they go into a withdrawl and craving mode...the yeast are screaming for food. Because he has no appetite now, maybe he was exposed to more infection, thus the increase in pandas symptoms. Hopefully, he will get stronger and turn around soon. I like the low thyroid possiblity, can you get a thyroid labs checked out, easy fix with meds. Just my 2 cents... Carole

HI, Me too...at 3:06 on Monday 12/1. CHEMAR,,,Job for you! Mustang Carole

HI Suzan, Medication given for anasthesia for surgery can definately affect your child, and it takes time for it to get out of the system, also, she is on more meds for pain, etc. She needs time to rebalance her system to normal state. Meanwhile, you can help her, continue a strict gluten free diet, lots of rest, and make sure her kidneys and bowels are working well...daily BM's to detoxify and pass stuff out of her body, rather than be recycled from constipation. Support her immune system by cooking from scratch with natural organic herbs instead of boxed mixes full of additives causing free radicals in the body. Be sure she is getting enough vitamin support for healing, the usual Vit D and C, etc. Give her lots of hugs and one from me. Hope for healing, Mustang Carole