4Nikki

Dd had a very similar reaction to mito support. Many of her symptoms have reduced more than 50-90%. We've been following the pandas doctor and never thought there might even be a mitochondria specialist. Turns out Mitochondria disease is a thing. Not sure if its dd's thing, Although dd is diagnosed with an unknown autoimmune illness and Pandas too.

I think it depends are what you are looking for that affect your approach toward treatment. Certainly the negatives are the cost impact and getting a preexisting classification with you insurance company for what is found. For DD, it would have been $2,000 out of pocket, We already had a clinical diagnosis so getting the genetic test had no tangible use for us. So for DD it was a no.

I don't quite understand the in numbers and what they do but depending on what protein and anti stuff are the build up in the basil ganglia can cause different symptoms. DD's pandas doc. Said with the three d2, lyso & kam being out of range her tics and rage makes sense as does her reaction to ibuprofen, benadryl and pseud. Mitochondrial support supplements have greatly reduced her symptoms. The big one being out of control rage. From every day to once or twice in a month is a big improvement. No gluten and limited sugar.

A home blood draw? I know that some labs now has this service for patients that can't travel or have a mental condition preventing them from traveling to the lab. We were able to do blood draws at home because my sister-in-law is a phlebotomist. If you can't find a service in your area. you can also ask you local lab tech if they can do it for an extra fee.

Depends on who does it. You will typically get a traditional analysis and is usually unbiased. Pandas/pans is a curve ball that will skew the analysis based on symptoms. We had one done at the request of DD's psychiatrist from UCLA medical. It has value and will give you a baseline document you can use with other professionals which can help with getting needed services in school or from social services. I would highly recommended getting one. Politically correctness has changed classifications to a single definition of ASD. I would think that anyone with pandas/pans undergoing an evaluation with an active flare would get this definition.

Perhaps dosage depends on weight. DD's first 2 blasts we saw increase and changes to her tics. Once the blasts were finished we saw greatly reduced symptoms.

There is something wrong about that article.

Our DD had all the clinical symptoms of pandas/pans. Evey doctor she has seen concluded that her symptoms were pathological and not behavioural. She was diagnosed in her 4th month by her PCP as having an unknown autoimmune illness. We didn't care what the doctors called her illness as long as that could treat it/manage it. Along with the diagnosis comes insurance and/or social services funds. We moved from southern California to Washington state in 2013 almost 2 years after the onset with no pandas diagnosis. Dd's diagnosis of pandas came from her physiatrist at Seattle childrens he ordered the Cunningham panel as a confirmation of the diagnosis so he could refer us to a pandas specialist. The Cunningham panel to diagnose pandas/pans provides evidence for the more expensive ivig and plasmapheresis treatments which can be used in part to get insurance to pay the bill. The majority of the plethora of blood tests ordered by various doctors to find the causes of dd's symptoms, be it positive and negative got us nowhere toward being able to manage dd's symptoms. The history of tests does help rule out many co-ailments. A second panel would not do us much good, unless DD's symptoms changed. We know that dd needs mitochondrial support and her neurologist is ordering a mitochondrial panel so that we can adjust the supplements according. Without the Cunningham panel, we wouldn't be where we are today in managing and treating dd's symptoms. Her pandas specialist has helped us tremendously reducing the intensity of DD's symptoms.

Dd, has had some success with steroid blasts but it did not develope from Lyme unless she's shown no symptoms of Lyme other than Co-pandas symptoms.

https://www.pandasppn.org/diagnosticguidelines/

Dd responded to steroid treatments as well. But then after 8 months or so symptoms started up again although not exactly the same. We were also thinking that inflammation is the issue and it may be that the steroids did just that. However, her GP said that perhaps what the treatment did was reset her immune system when it was haywire. Her pandas doctor started mitochondrial support and she her symptoms are still there they are less intense to where she has a sense of control. Insurance wasn't going to pay so I started setting aside money to get the test done. It's cheaper if you do it on your own, but I paid a little more and did it through children's hospital which allowed us to do the test quicker and give me more time to pay it. Mom or dad can be triggers which adds to an already extremely stressful situation. Dd symptoms could easily get exasperated when mom and dads stress overflowed. Sometimes we need a little outside help. A full body massage for anyone involved in stress won't hurt.

We have also been though this with Dd's anxiety. I found that using a wheel chair is a tremendous help because she doesn't have to make the steps. I use a drowing sensation senerio to explain to people how she feels when the anxiety hits panic level. Some magic pills like benadryl are blockers for dd and symptoms come back more intense. If you know what the Cunningham panel numbers are? your pandas doc might be able to get something to help with binding to clear up the volume. Advil cold and sinus is ibuprofen with pseudoephed which was our magic pill for a while. Ashwaganda helps curb dd's anxiety level but we also give her mitochondrial support stuffs. Dd's anxiety gets so bad that she can go into panic mode and start to pummel her head to try and beat it out. I can barely hold her to stop her from ripping her hair out. When getting to the doctor is imperative, a wheel chair and some help has to be planned. If your child is anything like dear daughter, I also have the restraints. We have many aborted trips due to episodes along the way, delaying our hour or two in advance start to get her there. We have about a 60/40 success failure rate. When an episode happens in the doctors waiting room, the staff is more accommodating toward planning to get though a successful visit.

I won't be able to answer that question. But I can say that it was mostly trial and error And persistence and determination or you can have money to hire smart people to figure it out. Blood test after urine test, after blood test and allergy test and strep test. Finding high liver numbers, backward thyroid numbers etc. (doctors) should know, but most don't have exposure to patients with these symptoms with traditional medical practice being a referral to a psychiatrist and then to admit to a mental institution. When your going through months of multiple daily rages you try stuff. Some people with experience said ibuprofen worked for them. We tried 1000 mg and it had an affect on reducing the rage and other symptoms and sometimes it abated the rage. The er doctor suggested benadryl. We had some success with benadryl but after it wore off, the symptoms were more intense including the rage. We discovered by accident that Advil cold and sinus, was a magic pill. Sometimes once a day was enough and at other times it was three or even for times a day to keep the symptoms away. We loved it caused it worked. But it only masks the problem and when used too long has side affects. It has only 200mg ibuprofen but 30mg of pseudoephed. The neurologist said they often prescribed pseudoephed for ADHD patients. Dd's MRI's were clear but the neuro said her inflammation may be on a smaller scale may not have been picked up by traditional MRI. It needed one where they monitor the brain flow rather than tissue inflammation. The problem was dd's anxiety was too much for her to do the test. We had many failed attempts. This was before we had the pandas diagnosis. We later found out with the cunningham panel with results and her high numbers that the benadryl being a blocker damming the buildup in her basal ganglia causing a bigger buildup and the pseudoephed actually promoted the binding helping to clear the buildup. Which made sense to the pandas doc. The pandas doc monitored her closely every two weeks. She had early success that lasted 8 months with a steroid blast. Somehow it resets the immune system. The doctor you have, has to be involved with your health if you are going to make progress. Having Pandas is not like treating a single infection. Most GP's have revolving doors to speed through patients in order to collect fees. It's a business. Dd's first GP was not helpful and if my wife being an OR nurse being familiar with the system kicks butts with sub-par services. I hunted down a new GP that was a biology specialist exposed to one pandas patient. She diagnosed DD with an unknown autoimmune illness. It got us pointed in the right direction but we also had no idea of just how difficult finding lasting help would be.

It's my understanding that anyone can order a test. Possibly the problem is that insurance will not generally pay for the tests if it's not ordered by the doctor treating you. Thus perhaps "Amy", as a policy, won't order tests? Prescribing medication is a different issue. If your GP is not willing to work with your specialist no matter where they live, you might want to rethink your GP selection. My wife is an OR nurse and generally chooses the best surgeon as her GP but over our 30 years together she has changed her selection process to my point of view as to what works best for us being the best counselor.

For so long we endured similar. Success and failures with magic pills. Discovering various infections that were causing flares. A Plethora of tests. Negatives and positives. Some common themes are, sensitively to doses. Too much or too long can cause reactions as can surprising not enough not long enough. Diet can cause exsaberation. Sugar, gluten, etc. DD responded to ibuprofen with sudifed for over a year but then her autoimmune started reacting to it becoming a trigger and attacking her organs. Finding what throws their immune system is crucial. mitochondrial support has been keeping her rages under control the past 6 months. We been so exhausted that we still have to learn what that is. I bought a climbing harness with belt clips that DD can just step into. It has belt loops that bracelets can quickly be clipped to as a temporary restraint because she can pummel her face with bloody nose, bruised eyes, broken swollen lips and even rips out her hair out trying to get "it" out of her head. An episode can last 30-40 minuites. With the mitochondrial support restraining is less necessary but when a period comes it can get bad for a few days. I've been working with DD to self control in a safe place, which is her Bed. Behavior is tough with cognitive regression. I'm trying to learn how to use the newer behavior services that are springing up since many of the social services has no clue or we haven't found the right way to ask. I do know they are taught only to address asked questions. So one tip is to ask specifically that you want every service your child is entitled to.

Dr. Imbus in Pasadena both father and son are excellent neurologists. They are not pandas Dr. But they wont quit on you son like many Dr. would when the diagnosis is elusive. I'm sure if we were still in Southern California they would still be looking after the health of our dd. The plus with these two is they has expertise in areas pandas Dr. Don't.

Oh we don't have a problem with blood tests any can be ordered directly by the pandas doc. There's no limitation on ordering tests it's just how they get paid for. Test can be expensive. DD GP is very practical and often offers alternative so that we do waste budget.

We live 2.5 hours away from dd's pandas Dr. In Seattle. DD has a primary care doctor 25 mins away that prescribes some of the medications when other Dr. fell off DD care. We gave the contact information to do's pandas Dr. and they coordinate and share info like blood test results the ways any other specialist should do. We have Skype visits with the pandas doc. Every two weeks or a month depending on the need to make adjustments. The insurance is ok with Skype calls and it saves us a 6 hour day trip. We have many failed attempts to make appointments at children's hospital Seattle. I'm not sure if Dr. G at Vital kids medicine Seattle intakes adults. She sees DD now 19 but started her as a minor. HTH

Something to keep in mind about diet is that there are thresholsholds, sensivity, exacerbatiins, all have various affects. Example: We can easily think that a item/product is a cause but it may be that it's a combination produces a trigger when an illness present and no trigger when the illness is not present. Process of elimination typically is not complex enough to determine what is good or bad. It's hard to understand balance with measurement and in many cases what to measure. DD at her onset reacted to sugar because she sick at the time and sugar e, but we all know that exacerbated her rages. But we all know that sugar is needed by the body and that too much sugar becomes toxic. Point being sugar is not bad but too much sugar is bad and not enough sugar is bad. Just some thoughts.

Even lower doses over a year will start throwing the immune system off course. DD's symptoms were under control for 18 months but then her thyroid liver and kidney number started having issues.

So DD had completed a couple of courses of Anti-biotics following consecutive flares, clearing up a case of strep and another for bacteria infections. Then a couple of days afterward she had severe symptoms and a big episode, But then her symptoms calmed down following. A week goes by and again she flare up with severe symptoms and a big episode. We noticed the this coincided with her video screen time. I did a quick search and found this article: https://www.psychologytoday.com/blog/mental-wealth/201508/screentime-is-making-kids-moody-crazy-and-lazy So of course you can find anything on the internet you search for and someone will be selling a book or how to fit it. I was hoping I could get some feed back on anyone with experiences?

DD's flares are relentless. The family gets wreaked, but we manage to keep it going. DD has better self-control over her symptoms when I'm around, but she feeds the rage symptom when I'm not. I've concluded that we have to prepare for DD flares and setup a safe room. I've been looking for office cubicle partitions but haven't found any good cheap ones yet. Tired? well.... If I close my eyes for 5 minutes, I'm out. When I awake, I'm still tired and the stress doesn't pass. DD's tics are going about 3/4 speed, while I write this, and I'm ....

Here us the chart: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf I was using my phone browser with a quick search and didn't look at the specific tests just there were a lot of hits on cheap alternative blood tests in the uk. The specific test do seem to be on the high side. DD insurance covered most of those test,

I found the best doctor for troubleshooting these type of issues "shooting from the hip" is the dermatologist. 9 doctors couldn't figure what was happening with my sons rash and diagnosed everything all wrong. His dermatologist did a skin test and found he was having an allergic reaction to his medication.

There are lower priced alternatives do a search for cheap blood tests uk.