4Nikki

Look at this site it has a diagnosis flow chart http://bestbloodtests.co.uk/general-blood-tests/

DD was put on the ABX before we got the test, Tests are difficult when DD is flaring. A panic attack can be nearly as brutal as a rage episode. The Home Strep tests are fastest, and the most convent way if we suspect strep as a first step. We have a standing visit with DD doctor ever two weeks who follows medication and supplements closely. How do you detox while on ABX? We don't put blind faith in front of traditional medicine, however prudence would dictates that a home remedy is preferable over a doctors visit if it works. DW and I have had discussions about our choice preference of a good doctor. My preference is a doctor who gives good advice basically a good counselor first, where as DW preference is the one that is a good surgeon. (She is a OR Nurse) My doc recommended I tie off a skin tag with a long hair to choke the blood supply and it falls off, her doc recommended outpatient surgery to burn it off. Both methods take care of the problem but my docs way dos less damage to my wallet.

Test results reveal facts. Some are actionable some are not. Their value is they help us make decisions. Of course, you have to weigh how much is that value. Getting a Cunningham panel gave us confirmation of her clinical PANDAS diagnosis with three of the five measurements being way out of range even without being in a flare. Where as expensive MRI, LP and the like showed negative results. The only blood tests aside from the Cunningham panel that showed results were, when she was sick or if her immune system was attacking her organs. With my experience regarding DD tests, there is no way I could decide not to do the MRI or LP when her doctor was admit there will be a result. I'll still being paying for many of those tests for the next 6 months. Without the tests, we could have not been prescribed a steroid blast treatment aimed at resetting her immune system and it worked great but only lasted for about 8 months. (this was done successfully or unsuccessfully twice depending how you look at it) Now her doc is looking toward IVIG. It's all not easy.

DD can get a rash and its not raised however it comes and goes with her episodes.

DD has been flaring pretty bad these past few months. Multiple bacterial and UTI and now Strep. She's not taking Augmenting and she gets lots of die off reaction from it. I ordered a Home Strep Kit and was taking a look at youtube to see the exact steps for the kit and came across a bunch of home remedies for strep I had not seen before. the basic ingredients seem to be: 1 x clove of garlic 1 x tsp of honey 0.5 x tsp of cayenne pepper I haven't seen this posted on the forum before. I'm pretty sure I have strep and DD as well. The strep kit just arrived so I'm going to confirm Strep and give this remedy a try. Any thoughts or experience?

I would think the answers variy depending reactions, on the symptoms and the exasperation of symptoms if any. DD has rage symptoms and when the antibiotic is working she gets much worst before she gets better. We contact the doctor with any negative reactions to confirm the continuation of treatment or if we have go stop because the reactions are to severe. DD'S doctor has an online app and I will just post a message. Mom gets hold of the doctors cell phone number, but it's easier for her than most Because she a RN but because of the Nature of this illness close care should be a mandatory requirement.

If you are cognizant enough to write this post, I would think hypnotherapy will work for you. I would try to address your phobias first so addressing you other conditions won't be impeded. To make a plan you have to have an analysis. Otherwise everything is a guess. If hypnotherapy, is not an option then medication from your phyciatriac doctor to calm you down enough to get the blood might be another way. Having said this, our dd still has symptoms with all the blood test, Cunningham and the like. This treatments have affects but the just seem to make the symptoms different not make them go away. Rage is the worst.

Just a reminder to watch out for carriers of strep as well.

OK! I'm clueless...... What movie? I can't get DD to even step into a movie theater.

I checked with DD's doctor and she said they special order from cbdplus and an independent checks the ordered percentages of the batches to insure quality. DW has experience with extracting oil from the plants and I was considering sourcing the plant strain without the thc however the only reason to do it would be for savings. It cost $140 for 2 bottles which would last 16 days. If it ends up being a magic pill, I will revisit the thought.

I'm not really an avid fan of government agencies because people behind policy making can be just as corrupt as schemers by using its power and insider knowledge about investing in products while shutting down compitition however, while there may be other motives for shutting down manufactures, they do weed out the get rich fake products.

Oh I forgot the fda warning link. http://www.fda.gov/NewsEvents/PublicHealthFocus/ucm435591.htm

DD's doctor recommend cbd oil and said some of her other pandas patients were taking it. I started looking for it and couldn't find any online. So first let me clearify what I'm loozing for. I want the cbd from Marijuana without the thc drug in it. Which is what writers are parroting from researchers that have all the benifits. Hemp is the alternative and the cbd from it is legal in all 50 states. The cbd from the Marijuana is illegal in to ship in all 50 states because of federal law. State laws state laws for medical use are OK but are still illegal to ship. The manufactures claiming it's legal, are using an alternative cbd and not the cannabinoids we are looking for. You might be able to find it in a local shop for pickup. Here are two links: http://www.drugpolicy.org/blog/are-websites-claim-ship-cbd-oil-non-medical-marijuana-states-legit http://www.leafscience.com/2014/02/23/5-must-know-facts-cannabidiol-cbd/

Just some quick tips that we learned to help curb the intensity. Learn the Combative Triggers: For DD it was restraining her. We found that using big pillows for blocking was far better than trying to hold her which made her even more intense. Rage is blind and can be directed try to find decoys for venting. For DD we found that tearing paper was far easier to clean up than broken windows. Some suggested a punching bag however, We also found that Advil/Ibuprofen helped curb the intensity however Advil cold and sinus worked even better for DD.

Living with a pandas/pans child can be extremely trying. And one with rage symptoms can test anyone mental state. What are some of the things you and your help do to deal with keeping mentally fit. My DW breaking up and is close to calling it quits and I'm search for any recommendations.

I can't tell you that ability didn't work, I can only say it seemed to help balance dd a bit for just over a year. Her rages would get completely out of control. It gave her a huge appetite. She gained 60 lbs in a year. We had to watch the types of food intake closely. We had to take her off Abilify slowly. Her appetite went away when we stopped and she lost 30 lbs in 3 weeks. We had more success using advil cold and sinus. 200 mg buprofen with 30 MG pseudoephedrine than any thing else but you have to watch out getting to dependent on it, because giving it on a regular basis can over put the immune system in overdrive.

If I may, First say, how sorry I am that you have to experience this situation. I pray that your son gets better. If you do not have a relationship with anyone in the facility, I suggest you might need an advocate. Preferably from the facility. I have found when dealing with any agency they follow the rules and are always on the defensive. The purpose of this posture is safety first. Which is what you seem to need. Our DD raged for 4 months straight, and I could not blame DD mom, if she admitted her but she stuck with it and so did DD's big brother. We knew nothing about how the system works and when we learned about how they can take control away, we needed to know what our alternatives were. I found with some people in my work that are set in their ways, can be difficult to work with and defensive.One of the easiest ways to break down walls is to ask for assistance. It seems to feed what they need. I found this to be true for other situations as well.

You could always check around for obedience training, typically I found the cost to be about ~$200 for 6 to 8 weeks of training, which I think is a great price. There are also many organizations that offer service dogs. Many are free and provide service through donations and volunteers, while others charge. Typically there is an application process (I'm not sure what happens when a child has violent behaviors). Some will not train owners dogs, while others will train both the dog and owner. You can also find workshops, and they usually fill up quickly. Also Youtube is a great resource as well. http://www.anythingpawsable.com/what-are-the-minimum-training-standards-for-a-service-dog/#.VYB-UPlVhBc

I don't believe it is necessary to have a script. It wouldn't hurt as backup, But there is no official certification for service animals. There are some organizations that issue training certificates, but again there are no state or Federal guidelines for service animal certifications that I know of. There are some civil organizations that have fines and/or jail time for impersonating a service animal, that can make life difficult so depending on where you live, its best to check out the local rules. http://www.ada.gov/qasrvc.htm We got DD a service dog for emotional support when we lived in California and when we moved to Washington the home we rented wanted a $1500 dollar deposit for pets, however the housing guidelines classified her dog as a service animal thus no deposit was required. The proof was not the dog but actually DD's assessment for her disability. I actually blacked out all of the details in the report except for the vitals. Some people use vests or colored tags so that the pet looks like a service animal when they enter business establishments, but it's all fake so that people don't ask. I recall correctly they are actually not allow to ask.

It's blank even for the neighboring states. The closest I found is one dans doctor in Iowa. My only possible solution is using skype, but I would have to verify with the company insurance provider if that's acceptable.

This past week DD has been doing extremely well with getting some supplements and new prescriptions from her new Pandas doctor. Having a doctor that understand how the systems works, what all the numbers and tests mean and how to make the adjustments, makes a huge difference over trying to guess. No matter how wonderful the career opportunity is and how much I want to take it, I can't go back on the progress we have made with DD.

Well, I'm guessing since t other posts, that pandas docs are rare in the Rea

Does anyone know if there are any PANDAS/PANS Doctor in Souix Falls, SD area. I'm trying to decide if it's worth considering a job offer, and before I even consider uprooting after finding one, this is my first deal breaker.

So this thread http://latitudes.org/forums/index.php?s=d41e5b358d2dbdbc1263301671242b7a&showtopic=23793 Just identified: this http://news.virginia.edu/content/researchers-find-textbook-altering-link-between-brain-immune-system I asked DD's Pandas doc and she was very hyped about it. All the stuff that goes on in the gut has a way to get directly to the brain. It's a lot of new research ground to cover.

The way I'm reading the article is that the accumulation of proteins in the brain is the result of the previously unknown but now thought to be a faulty vessel system with certain neurological diseases? Since this is a very small system, I'm imagining that inflammation of the vessel pathway is causing a bottle neck preventing the receptors from binding normally, which maybe why anti-inflammations help relieve the symptoms. And I have no idea what I'm talking about.