4Nikki

Not yet? I'm wondering if this is one of the first labs to popup that is related to this article: https://www.newscientist.com/article/dn27659-cheap-blood-test-reveals-every-virus-youve-ever-been-exposed-to/ I couldn't find a cost. If it is one blood test for every thing, then the services are masked pretty well. I could only find a $200 out of pocket reference to insurance an deductible. Most labs have itemized cost lists for each test.

When DD has a flare like she’s having now, we immediately bring her and check for typical infections. Turns out she has a bacterial infection. She when on amoxicillin, and got worse, I remember reading it means it’s working, but we changed it. Mom can’t handle the physical challenge of a big rage episode. DD’s on something else.

I’m of the opinion that the best doctors are the ones that provide sound counseling. By that I mean sharing their intuition, knowledge and wisdom. Our daughters pedi, who knew what panadas was, said giving a flu vaccine to a child with an unknown autoimmune illness was risky. This thought as been echoed by many. Vaccinations have also been recommended by a few doctors, however when questioned , all that have suggested quickly backed off then recommendation.

Might seem obvious but, Has he been checked for Lyme? Or seen An allergist?

You could alway pay for the Cunningham panel out of pocket.

Oh man! i can’t say anything about physiological things that may be affecting your child except that to address any possibilities we brought our child to the physiatrist. There he ruled out physiological diagnosis through observation, counseling & medications and concluded the behaviors were pathological. And proceeded with referrals to other specialists. This is not to say both physiological and pathological conditions may be factored as symptoms. Through our visits to the er to and a pandas specialist she explained the effects of blockers and meds that promote binding. Benadryl for our DD is a blocker and works great initially reducing symptoms for 4 to 5 hours however after it wears off, symptoms come back with greater intensity. Anti inflammatories and adhd meds helped her with binding and symptoms reduced at a slower rate but were more manageable. At times of menstrations, symptoms intensified with a wide range of triggers. I worked really hard with her so she would be able to self manage her symptoms. I’ve not heard before of probiotics having an affect on pandas/pans symptoms. But I did read that there was a discovery that the lymphatic system reaches through the brain barrier which was something thought not possible.

Hi Mare44, I’m in Washington now, but we found a very good primary care doctor Dr. Hau Bai in Chino Hills. She’s a pediatrician as well s microbiology scientist. She Is smart enough to know we would have had lots of problems processing insurance and other services with a diagnosis of “pandas” What she diagnosed was “unknown autoimmune illness” with a referral from DD’s psychiatry doctor to UCLA, they did an assessment report. This got us everything covered under insurance. It also got us a case manager with regional social services. We tried three different pandas aware doctors but none took insurance. That was in 2012. So it appears not much has changed. We were going to head up to the Stanford clinic, but relocated to Washington state And found help at children’s hospital. I think another good place to start would be in children’s hospital Irvine. They have some good interrogative doctors that can rule out Lyme and the like which can cause many of the pandas like symptoms. so I’m a little confused by your post. You have a diagnosis of “pandas” I assume this is a clinical diagnosis? Did they not suggest getting a Cunningham panel to confirm the diagnosis? Wouldn’t the doctor who made the diagnosis be the one to refer you to a specialist? They shouldn’t have just left you hanging with the diagnosis and have no idea how to treat the illness? Some suggestions: paper trails are prudent. Keep copies of all prescriptions, X-rays, scan and the like in chronological order. I made a detailed write up with DD’s complete case history kept electronic records of enerything. This helps with getting new doctors up to speed quickly. My wife made a daily journal. Tracking all medications, supplements, symptoms and behaviors. It is important to note, if possible, the pathological behavior symptoms and manipulative behaviors. This helps with the Physiatrists and social workers. If your daughters symptoms continue, you may end up going through a lot of doctors. hth

Most have experienced not being able to find a pandas doctor so your not alone it took us over 4 years to find one. The specialist doctor that gave us the most and appropriate support was the psychiatrist doctor. He did his stuff and ruled out all the mental stuff and then pointed us in a direction. It’s a long process. If the doctor didn’t get it, we moved on. If it’s not obvious, I would Definitely see a Lyme doctor. From there they can point you in direction where you might have better success. I would suggest putting a diagnosis of “pandas” in the back of your mind and use tack toward getting the professionals to come to a diagnosis that works toward appropriate treatments.

Dd has problems swallowing large pills and caps so we grind them and put them in a small medicine cup like the one for cough syrup. She doesn’t complain about the taste.

Gosh thanks so much for this thread. I’m going to have to read it a few times and see how it applies to dd and how supporting mitochondrial cell deficiency affects the levels. Her symptom intentensity has decreased on a scale of 1-10 being a 11 down to a 1,2 or 3. Evey time I check the Cunningham panel site, they have more complete and concise Information. A area of information that seems to escape my many discoveries in searching for causes is like the videos says that “attack within the brain including the basal ganglia”. I’ve typically been looking for answers on how it affects the basal ganglia. However, there are also other parts of the brain.

We are using a product called mitospectra. It’s expensive $100 per 90 caps. We give 4 caps per day two morning and nite. It’s reduced symptoms by 80-90 percent.

Try dr Imbus in Pasadena, both farther and son are impressive human beings as well as neurologists. If it’s pathological, it doesn’t matter what the illness is or what it’s called, they will treat your child. What worked for our DD was Advil cold and sinus. It’s behind the counter at the pharmacy. It has 200 mg ibuprofen and 30 mg pseudoephedrine. Separately they did not have the same affect but together the stopped the symptoms. Keep in mind it only helps with the symptoms not the cause. The Cunningham panel will give you a direction toward treatment.

Strep is not the only definitive. we struggled with test, after test, after test for many years with "an unknown autoimmune illness". Even though DD had 7 of 7 clinical symptoms for pandas, it wasn't until we had a the Cunningham panel test done, that a diagnosis of pandas was made. Then again we weren't looking for a pandas diagnosis, we just wanted our dd to be treated for a pathological affect rather than useless "mental" treatments.

So which is it rare or uncommon? The number of (pandas) strep affected is as many as 1:200 according to the article. If you follow the definition below it is "uncommon" and not "rare". I think the later must be more true just based on the activity on this forum. "Very common affects more than 1 in 10 people – ie the risk is 10% or higher. Common affects between 1 in 100 and 1 in 10 people – ie risk is 1% to 10% Uncommon affects between 1 in 1,000 and 1 in 100 people – ie risk is 0.1% to 1% Rare affects between 1 in 10,000 and 1 in 1,000 people – ie risk is 0.01% to 0.1%"

We used it for about 14 months but DD immune system started reacting to it. First was her thyroid and then the liver. She weighed about 100lbs and was taking 200mg. After stopping 3 months her liver and thyroid numbers cleared up. Obviously dosage and weight have an affect.

Hi all, tintaw, DD has had big improvements with mitochondrial support. Her rage level is down to extreme crying. When her anxiety level was so high she couldn't get out of the house easily the doctor did Skype visits. If benadryl works without having increased symptoms after it wears off, based on the pandas doctor's comments, the numbers in the Cunningham panel will be different than our daughters. Hers had three of the five really out if range and dd's pandas doc said her reactions to benadryl and pseudoephedrine made perfect sense. The ER doc suggested using 50mg rather than just 25mg for a bigger effect. For DD it worked but hers symptoms were over the top when it wore off 4 to 5 hours later. In DD's case pseudoephedrine helped with binding to clear up her log jam in her basal ganglia. The Cunningham panel cost near $1250 when we did it through children's hospital. If it wasn't covered, I would have saved up for $925 it costs if we had to do it ourselves. It wouldn't matter what state you are in. The lab has a kit you order and you can have a phlebotomy service at home. Some labs advertise home services. The doctor can also order home service which is better to have the cost covered. When DD couldn't get out of the house, we talked to a lab technician that was willing to take the samples for us at home for $60. http://www.moleculeralabs.com/order-cunningham-panel-tests/

DD used it for about 6 months from her pandas, it didn't appear to have any positive affect. DD's neurologist said it was useless for her and had us drop it.

A couple of suggestions. Pay attention to his diet. Sugar exasperated dd's rage. Allergies played a role as well. In dd's case it is gluten. Benadryl worked to calm her down but the rage came back stronger. When we finally found a pandas doctor that understood the Cunningham panel numbers she said the reaction to benadryl was understand able. Dd needed to clear her Basal ganglia, benadryl is a blocker. This may not be the same for your son. DD never hit anyone intentionally. I would liken it to a drowning. Its a panic state, anyone around should understand the reaction. We used a climbing harness as a restraint to keep her from hitting her head or pulling her hair out. The belt loops work well with wrist straps and clips. Understand what a 51/50 is through your regional support. Get training. Im trainned in judo and know the holds. Wrestling is good to. Dd raged multiple times a day for four months. Broke windows, walls, doors. I changed the windows with unbreakable glass.

Weight the risk. Proactive or not if you doctor is not making informed recommendations then it's near useless recommendations From my experience, you can forget about what Trifiletti's opinion is. Our DD's pandas doc, says since she is not exposed outside the house, don't get the shot. If she were going to school, then we would consider it.

"Scary"

Dd had increased tics by 3 or 4x. and she developed another tic as well but after the blast taper her symptoms reduced to manageable levels. Her doctor explained the steroid treatment was for resetting her immune system. I had thought it was for reducing inflamation. Dd responded to advil cold an sinus, but talk care not to rely on it long term. I think its a good idea to know which antibodies and proteins are out of range so you pandas doc can recommend an appropriate medication for a flare. Dd's numbers were not good for benadryl because while it helped stop symptoms initially, it a blocker and cause a buildup resulting in increase in symptom intensity. Pseudoephedrine with ibuprofen worked promote normal binding. This may not work for your flare.

I'm not sure I understand what homopathic is? The placebo can be powerful to those who "believe". The body heals itself. Medicines, the mind and the like like help trick the body into reacting or not reacting thus helping the body to heal. A somewhat simplistic way to look at it.

We are north of Bellingham, I've actually found more Pandas help in Washington than in Southern California. Unless you have deep pockets and use one of the three DANS/Pandas doc's who don't accept insurance. The clinic opened in Stanford opened but was overwhelmed and 6 months after opening stopped taking patients out of state. center for healing neurology, Dr. Ilene Ruhoy near Seattle children's is DD neurologist. Her pandas doc is from Vital Kids just around the corner .

I don't really know the technical details of the mitocrandial system just the DD's pandas doc and her neurologist put her on mitochondrial support supplements. Her pandas doc started with a very expensive brand called mitospectra. It seemed to help because her symptoms decreased from a scale of 1-10 from 10 down to 3 or 4. We have to adjust how much she given, too much or too little is not good. Tight on budget, I started getting the supplements to keep them handy. Coq10, l-carniitiine, Coenzyme etc. You can google the contents. DD's neurologist made adjustment with other supplements blood work results. Dd rage has reduced to crying but her menstration can get it going for a few days. She's not cured but its way easier to deal with a crying child than one that is raging multiple times a day. I've Googled mitochondrial system but the explanations are a bit overwhelming for me to take in. Perhaps if I weren't so tied from the years of battling, I could absorb more. http://m.courtagen.com/?url=http%3A%2F%2Fwww.courtagen.com%2Fphysicians-what-is-mitochondrial-disorders.htm&utm_referrer=#2783

The first thing we found to help DD reduce her intense rage symptoms was her diet. No sugar and gluten. Then antibiotics, then ibuprofen, then the big helper advil cold and sinus. But what helps depends on the Cunningham panel result. In DD's case benadryl being a blocker helped reduced the rage symptoms right away but the rage came back more intense after. The phuseudo in the advil cold and sinus with the ibprophen helped with the inflamation clearing up the overload in her basil ganglia. You have to have the tests to what's best, but it will take time. You can try benadryl and if some of the cause is allergy then is might be a good but if he's like DD and the rage is a result of a buildup causing a dam, then be prepared for more intense rage when it wares off. With dd it got us about 4-5 hours of relief from the rage but it was not worth in level of intense rage when it came back with longer duration. About 20-40 mins increased to much more than an hour very very exhausting. 1 thing is we carried benadryl for emergency when traveling and a nasil spray to stop seasures prescribed by an ER doctor because dear wife is a surgical nurse. Basically it would put her out if she went into an intense episode for safety. I also got a repelling harness and wrist bands with quick clips. DD was very receptive to wearing the harness so could easy restrain her hands if she was having a flare and would wear it. She went from breaking windows and doors to trying to bang the rage out of her brain by banging it out either hitting her brain through her face, crashing her head into anything or pulling her hair out. She tried breaking her hands in the door so restraining was absolutely necessary. The thing is you really need to learn techniques for blocking and restraining when dealing with rage. Blocking is always better than restraining. When you restraining they become more intense and combative. The way I explain it is. Its similar to a person panic from drowning and you are the rescue person. If you are in the way they can't see you and will pull you under to get air. So, similar to rage, they cannot see you, they don't know what's happening, they are in a server panic and want it to stop. I've had martial arts, wrestling, judo. I would recommend judo classes. Its all about techniques. We have had the most success with Mitochondria support. Steroid blasts helped too.