Healingthedude

My sons tics get worse during allergy season. My Dr warned Oct/Nov and April/May I may need to step up antiinflammatory regimen including IVIG. The allergies affect histamine which creates an inflammatory response. Quercitin, EFA's, antioxidant supplements, clean diet and greening the house help. I have heard if things worsen during full moon that is often Parasites or Lyme.

We use Earth Balance-the red one has no soy if your child has soy allergy like mine. We also use ghee. Check out this website: http://www.gfcfdiet.com/bakingcanning.htm The gluten free bakery near me uses Fleischmann's margarine for everything (probably much cheaper that the others) GFCF Website suggestions Margarine Butter Substitute Market Place Earth Balance www.earthbalance.net 201-568-9300 Natural "Buttery Spread" Whipped Spread Buttery Natucal All Vegan Buttery Spread Natural Buttery Sticks Also for baking: Earth Balance Shortening (For Healthier Pies, Cookies, Cakes, French Fries, Chicken, etcetera!) Fleischmann's www.fleischmanns.com 800-988-7808 (available in supermarkets) Fleischmann's Light Soft Margarine in tub Fleischmann's Unsalted Stick Margarine Fleischmann's Soft Light Stick Margarine Fleischmann's Unsalted Margarine in tubs (two container pack) GFA Brands, Inc. 201-568-9300 www.smartbalance.com The ONLY Smart Balance "butter" acceptable: 37% Light Buttery Spread Shedds Willow Run Spread in sticks & tub 800-735-3554 Ghee (this has been added to the acceptable list after much research and assurance that it is approximately 98% fat and the remaining is water. Recommended to be used sparingly in small amounts for a butter flavor. It works well for baking. Purity Farms Ghee http://www.purityfarms.com/ 303-647-2368 Mac Nut Oil 866-462-2688) or www.macnutoil.com Macadamia Nut oil is good for baking. It tolerates very high heat 410 degrees (higher than olive oil) Maranatha www.worldpantry.com Macadamia Butter Raw Almond Butter Organic Tahini Butter Omega Nutrition Coconut Butter 1-800-661-3529 Hain's Safflower Oil Margarine 1-800-434-4246 Willow Run Soybean Margarine #1-800-872-1252 Crisco All-Vegetable Shortening Sticks 1-800-827-6600 www.crisco.com Crisco Regular Shortening Sticks Crisco “Butter Flavor” Sticks Pam Cooking spray NO Butter Flavor Pam! www.pam4you.com 800-PAM-4YOU

I have heard several parents say that when brand was not specified on orders, and the hospital switched to Privigen their kids had reactions or it did not work as well as Gamunex/Gammagard. Didn't mean to alarm you, Just a consideration.

We love our pediatrician Dr Rosen@the Whole Child Center in Oradell NJ. He is totally understanding and a very good Doctor. Don't know what part of the state you live in, but he is great.

FYI...I was told by our immunologist that if you are doing IVIG you have to wait a full 3 months after treatment to get an accurate Lyme test. If you are not doing IVIG, I agree with everyone else on the testing.

Yes, Dr K uses Gammunex, Dr B Gammagard. We use Gamunex and it is covered by UHC. I think they are both good. I would be careful when you switch.

I have heard good things about this one. Dr. Frank Duffy MD Psychiatrist / Neurologist Medical Education Harvard Med Sch- Boston Ma 02115 Graduated 1963 Medical Residency Children'S Hosp, Neurology; Mass Gen Hosp, Neurological Surgery; Yale New Haven Hosp, Flexible Or Transitional Year Hospital Affiliations Unknown Practice Affiliations Childrens Hospital

It took us 6 to 8 months to diagnose my son in 08. Initially we did IM Bicillin shots which worked like a charm for 4 months...then he became resistant to the antibioric and it stopped working Steroids made my son too aggressive and behavioral to really see any benefit. IVIG has been the best for us. We did AB and Steroids until we got IVIG approved by insurance- took about 4 months to line up everything. I have heard that for some people who catch it early 1-3 months antibiotics may be enough. Wishing you much healing C

Thanks for all the abpve info. We are hoping to do the high dose staying in the hospital 24 hours 22grams 10am to 2 pm play games watch movies go to bed another 22 grams 2 am to 6 am. I think if I bring my son home he will not be willing to go back the next day for another infusion. He is used to going once a month, stay overnight and daddy picks us up the next morning. (He usually has the IV while he is sleeping. easier for us) Hoping 12 hours between the 2 infusions is enough to calm any reactions. Has anyone else put only 10-12 hours in between versus 24 for high dose?

We use Quercetin 2x daily over here. Natures Benadryl. Great for seasonal allergies and anti inflammatory. We use Quercitin nasal spray too. Combine with 5htp and Zen (combo gaba and L theanine) to calm at night before bed. Sleeps great with this.

I have a son with severe PANDAS/AUTISM. His Tics and OCD have been gone for 17 months using IVIG. He was doing amazing. The PANDAS suddenly came back the end of May and the treatments are no longer working. We went to see a very good immunologist the beginning of Sept and he recommended High dose IVIG. 1.5G/1kg We have been doing the lower dose treatments at our local hospital and my son tolerates it well. It takes a huge amount of work and preparation to do this treatment with a hyperactive/OCD 10 year old boy with Autism. We have to have the same hospital room, same nurses, same rewards for putting the IV in etc every time or he will tantrum and possibly pull the IV out etc. I was hoping the immunologist could go over the specifics of the high dose protocol with our local Doctor so we could continue to do this where my son is comfortable. The Immunologist refuses to talk to our pediatrician. He says he should already know how to do it. He just sent a short letter recommending the high dose protocol for my son. I am so frustrated. He wont discuss the steroids or how to space out the meds over 2 days, etc. I have called my DAN Dr to talk to Dr K in Chicago. We just want to make sure we are following the right protocol at the hospital to prevent reactions and avoid any undue headaches, nausea etc. Any specific info on the 2 day high dose protocol or help facilitating communication between the Drs would be greatly appreciated. Where do you guys have your IVIG done. Will your Doctors send orders to your local hospital or do you travel for the treatment? My son is having upwards of 800 tics a day at school. I am very stressed by the whole situation and just want to see my son get his treatment and some relief ASAP. Thanks for your help. Carolyn

I have a son with severe PANDAS/AUTISM. His Tics and OCD have been gone for 17 months using IVIG. He was doing amazing. The PANDAS suddenly came back the end of May and the treatments are no longer working. We went to see a very good immunologist the beginning of Sept and he recommended High dose IVIG. 1.5G/1kg We have been doing the lower dose treatments at our local hospital and my son tolerates it well. It takes a huge amount of work and preparation to do this treatment with a hyperactive/OCD 10 year old boy with Autism. We have to have the same hospital room, same nurses, same rewards for putting the IV in etc every time or he will tantrum and possibly pull the IV out etc. I was hoping the immunologist could go over the specifics of the high dose protocol with our local Doctor so we could continue to do this where my son is comfortable. The Immunologist refuses to talk to our pediatrician. He says he should already know how to do it. He just sent a short letter recommending the high dose protocol for my son. I am so frustrated. He wont discuss the steroids or how to space out the meds over 2 days, etc. I have called my DAN Dr to talk to Dr K in Chicago. We just want to make sure we are following the right protocol at the hospital to prevent reactions and avoid any undue headaches, nausea etc. Any specific info on the 2 day high dose protocol or help facilitating communication between the Drs would be greatly appreciated. Where do you guys have your IVIG done. Will your Doctors send orders to your local hospital or do you travel for the treatment? My son is having upwards of 800 tics a day at school. I am very stressed by the whole situation and just want to see my son get his treatment and some relief ASAP. Thanks for your help. Carolyn