4Nikki

Thank you for the reply, it helps. Back in 2013, DD's Neurology Doc said he prescribes Pseudophedrine to some of his ADHD patients. He said when you understand how it works it makes sense, because the obvious thought was why would anyone give speed to a raging child. When we told him about the advil cold and sinus with the 30 mg of Pseudophedrine, he tried 60 mg of the Pseudophedrine on DD but it didn't work. Only the Advil with of Pseudo worked well. Using the Ibuprofen alone nothing reduces the intensity short of 800 mg. However, at the time we gave those dosages we did not know if DD had PANS/PANDAS. We were desperately looking for a way to help manage the symptoms. We have kept in mind to always go low and slow with everything. The new Dr seems to know what is going on, and has lots of experience with adjusting the supplements. Right now were are doing once a week adjustments taking baby steps.

@llm, Can you elaborate on the why non-use of Aspirin? What does child mean? I'm a little older and growing up Aspirin was the goto for just about everything. Now everyone is afraid of it. My pop's was on a daily dose of baby aspirin as a partial blood thinner and the only side warning was it could cause bleeding if used in higher doses in some people. I kind of liken it to the non-use of msg with food. DD's onset was November of 2012 and she raged continually for 4 months, until she got a dose of Amoxicillin. Then after another 2 months the rages came back. We found 1000 mg of Ibuprofen helped reduce the intensity from about a level 5 to a level 1 or abated the episode. Verbal Tics were a warning sign that brain fog was imminent, followed by an intense rage. We felt we relied on the Ibuprofen too much and started to limit it. Late 2013, we discovered just 200 mg Advil with 30 mg Pseudoephedrine worked even better especially with the rage. It kept her form zoning out, but again we relied on it too much. As much as 2 and 3 times a day. DD's Thyroid numbers and liver numbers were affected, Turns out her Autoimmune system was starting to attack her other organs because of the use of the Advil. Once we stopped it, her numbers starting turning back to normal. Now we use it only sparingly but I found just 1 baby aspirin 87 mg (150 lbs) keeps her good for half the day when she is flaring. Again we limit it's use to only when she starts with the symptoms. DD has a new Pandas Dr. This month that is introducing us to methylation. She stated with a Probiotic, Magnolia, Curcumin, Boswellia, Wobenzyme-PS, Phytocort, Ashwaganda. It's all 50% over my head and I still have to absorb what is going on.

Many are afraid to have the potential info about insurances getting a hold of your personal risks at some future date so the suggestion is to do it anonymous. not sure what search but here the link. https://www.23andme.com/

If the doc is not willing to look at the symptoms, the "relation to Autism" is a typical traditional Physician answer, when they have no clue about what is happening. It doesn't really matter what they want to call it, its a dismissal of the symptoms and basically says there is nothing "you" can do. I'm not a doctor but sounds like it could be a Pandas/Pans reaction to me and that Antibiotics seemed to be working. A Dans/Pandas doctor, if you can find one, will be more open minded toward investigating the symptoms. You shouldn't have to convince any doctor of symptoms mean something, they should be able to look at the symptoms, and then do some analysis before they give you an opinion.

It's All way over my head: http://www.jimmunol.org/content/178/11/7412.full Home WHAT DOES THE CUNNINGHAM… The Cunningham Panel™ is comprised of five (5) different tests. Four of these clinical tests include enzyme-linked immunosorbent assays (ELISAs) to measure antibody titers against four neuronal antigens present in the brain; these neuronal antigens include: 1. Anti-Dopamine Receptor D1 2. Anti-Dopamine Receptor D2L 3. Anti-Lysoganglioside GM1 4. Anti-Tubulin Each of these neuronal antigen targets were chosen because of a correlation with symptoms of neuropsychiatric behavior. Many targets were originally screened and tested, and did, or did not, show significance. The tests we selected include the four (4) autoimmune neurologic targets (anti-dopamine D1, anti-dopamine D2L, anti-tubulin and anti-lysoganglioside) which are highly concentrated in neuronal cells in the brain and have involvement in neuropsychiatric and/or motor movement activity. Anti-Dopamine Receptors Dopamine D1 receptors are highly concentrated on post-synaptic neurons in the brain whereas Dopamine D2L receptors are highly concentrated on pre and post-synaptic neurons. Normal functioning of dopamine receptors are responsible for many neurologic processes such as fine motor control, cognition and other forms of behavior. Anti-Lysoganglioside Lysoganglioside GM1 is a concentrated in the central nervous system and associated with membranes of nerve cells. Autoantibodies directed against lysoganglioside may interfere with normal neurologic activity and have also been associated with degenerative neurologic conditions such as Gillian-Barre syndrome and other neurologic disorders. Anti-Tubulin Tubulin is an intracellular scaffolding protein located in all cells but in high concentrations within the cells of the brain. Anti-tubulin antibodies may interfere with normal neuronal cell function and have been associated with other autoimmune related conditions such as Hashimoto’s Thyroiditis and other autoimmune thyroid conditions. CaMKII The fifth test, CaMKII (Calcium-dependent Calmodulin Protein Kinase II) is a cell stimulation assay in which human serum is incubated on human neuronal cells. CaMKII is involved in the up-regulation of many neurotransmitters in the brain. The increase or stimulation of CaMKII activity by serum antibodies is measured compared to a baseline control and elevated activity may be associated with an infection-triggered autoimmune condition. Reference Normal Ranges Each of the five tests include a “Normal Range” which is a range of values ascertained by testing an appropriately identified normal pediatric population for this type of panel. The normal ranges are listed in a table under each of the five test headings. PANDAS and PANS diagnoses are based upon defined clinical characteristics. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS and PANS. Because these are metabolic tests, laboratory values can change over time and certain immune modulatory treatments may affect the laboratory results. These treatments include intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. Therefore, we recommend taking specimens prior to these treatments or waiting 6-8 weeks after treatment.

We are still working through a treatment plan. We have been able to manage most of DD symptoms with Advil Cold & Sinus which is 200 mg Ibuprofen and 30 mg Pseudoephedrine HCI for over a year, but we relied on it too much and DD Autoimmune system started attacking her organs, the first attach was her Thyroid followed by her liver, so we stopped using Advil for a few months and her numbers went back to normal. So now we are trying more natural anti-inflammatory and use the Advil sparingly with a couple of low doze SSRI's. I've also been using baby aspirin and it's been helping. Now Dr. G has give us some more natural stuff to start using while we await some blood test results before we start on longer term antibiotics. The people at VitalKids are professional as well as beaming with care and thoughtfulness, but the building kind of sucks. Some bad odors outside on the ground floor. The landlord needs a kick in the butt.

Hi seamom, Sorry sorry to read your sons troubles. For us, it was a very long road to get confirmation that DD actually has PANS/PANDAS. With so many similarities of symptoms to PANS/PANDAS and traditional doctors turning their heads the other way, we needed to rule everything else out. As it turned out, ruling out PANS/PANDAS would have saved us time, money and emotional turmoil. Unfortunately, we didn't have a doctor who knew what to do or what PANDAS was. This site helped guide us. 4 months from the onset, DD had a 10 day course of Amoxicillin and it stopped the major symptoms almost immediately. The symptoms came back after 2 months and 10 days of Augmentin for bacteria infections made her symptoms seem worse and on a cycle. Some people on this forum, told me DD might be having a hexing reaction due to the Augmentin and that it was actually a confirmation sign, because when the bacteria die off, they release toxins that cause the symptoms to exacerbate. Meaning it was working. Pandasnetwork.org List of Physicians After getting the Cunningham panel results, Dr. French at Seattle Children's helped connect us with VitalKids Dr. G. We did the Cunningham panel though Children's because the lab is out of network, but since Children's is in network, the insurance covered 80% of $1202 ($240 Cost) rather than us paying out of pocket $925 direct to the lab. Moleculera Labs has gotten better working with network organizations and now know how to save patients money providing specialty services. So your in-network doctor can order Cunningham panel through the in-network lab and they send the sample to Moculera Labs as a specialty service and all of this should happen without you getting involved with the details, which is the way it should be. I added the last paragraph, because had we done this first, during the initial onset, we would have had a better direction of what to do and the Doctors would have available tangible evidence to support treatment.

We tried working with Dr. T and got the same treatment, but at least he followed through with the blood tests, but after a second consult, he stopped communicating. I didn't like being held hostage. The thing I did, prior to contacting Dr. T, was get DD's PCP on board with using Dr. T's consultation. It was suggested DD might have hashimoto's encephalopathy because of results and said it was a possibility. DD's PCP didn't know what to make of the results because he'd not seen the odd thyroid numbers before. A visit to the endocrinologists, turns out it wasn't, and DD's Autoimmune system was actually attacking her thyroid. We got lucky at Children's Hospital Seattle and finally got connect with a Pandas Doc. Very thorough intake forms asking all the questions needed to obtain enough info before we stepped through the door to be able to make a clinical diagnosis. A copy of the Cunningham Panel results and she confirmed it. No wasting of time, just quick to the point getting so much done in one visit. She even did the blood draw in her office because DD was a little anxious.

We will just have to be in disagreement. Although I have to eloborate. The case of our children is that there is tangible evidence of a illness not that our children are viewed as being not sick. When you bring your electric car in that has a trouble light for service to a gasoline engine mechanic, he listens to you and says he doesn't work with electric motors and can't help you. He doesn't get to charge you for a diagnosis because he has preformed no service. The car still has a problem and if the mechanic knows another mechanic who does work on electric engines, he can offer you a referral where you can get your car serviced. Where the ethics line is crossed is when the mechanic says I see you have an electric motor with a service light, well... we don't like electric motors and won't work on them so we can't help you. Oh BTW we have to charge you for the time we took to tell you we don't work on electric motors.

I tend not to agree with the logic of not treating as an option for the doctor, but rather its an attitude that is a polite way of not discussion what the doctor really thinks. A referral is a specific action of doing, not an inaction. No action, being a bystander, watching something happen, is not getting involved with their patient, is not acceptable. When a doctor sees a patient, there is an obligation to do, whether the action is to treat or refer, an action is required. Doing nothing and accepting a fee in my opinion, is not only hypocrisy, but criminal.

Just prior to dd's onset of pandas symptom dd wouldn't speak to anyone except at home or her space therapist. We thought she had selective mutism. Hypnosis has been used successfully with helping to reduce anxiety which apparently is the root cause. The are some interesting documentaries on YouTube if you search selective mutism.

We have seen Doctor's willing to try and then give up after finding nothing and Doctor's who are willing to stick it out and not quit. We have come across doctor's that just flat out say, "I can not help." Then, we have come across two neurologist, that say "We do not believe in PANDAS". I would venture say, that this latter attitude clearly violates the oath. It's one thing to say you don't have faith. It's quite different to refuse to accept tangible evidence contrary to what your were taught because you have faith in what you were taught. "A Modern Version of the Hippocratic Oath I swear to fulfill, to the best of my ability and judgment, this covenant: I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow. I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm. If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."

I was thinking the higher cholesterol might have something to do with the CRP levels which is the reason I mention it.

When our DD starts with the neuro symptoms we Iook for the anti iinflammatory the slow down. We cut out gluten and sugar which seem to help so pay attention to his foods and check for allergies if you haven't. When we fall of the wagon, we notice an increase in symptom intensity. Fish oil may help too. Has he had a Cunningham panel done? We haven't found anything for DD's anxiety.

What about asprin?

We brought DD o her primary care doctor, asked her to prescribe antibiotics for strep she refused said she was ok, insisted she check her titters which came back positive, decided to find a new PCP.

I couldn't find an thing this being an anti-inflammatory. Any clues?

I wanted to bump this thread, has anyone looked at these levels? I've been reading alternatives for anti-inflammatory and this one jumps out with fish oil as a recommendation. DD has elevated cholesterol.

DD symptoms of rage were severe and multiple times a day for four months. We saw an immediate change on the first day. It's been so long, I would have to take a look at my notes, I think it on took a couple of days to see considerable improvements but we were new to pandas and didn't have a clue about what was what. We also changed her diet.

Thought I already posted, DD had a MRI and LP which we are still paying for. Her neurologist was sure there would be something but if revealed nothing remarksble.

Just got dd cunningham result. High for D2, Lyso and CAM. No flare no tics at time of blood draw for at least 3 months and post steriod taper 3 months.

Dr T gave dd a possible diagnosis of Hashimotos encephalopathy with high anti-thyroid numbers (Range <40 Anti-TG-131;Range <35 Anti-TPO 89.4) but the endocrinologist threw it out and said it was so because the autoimmune system was attacking the thyroid. I did notice the T3 Free was 5.33 with a normal of 2.5 - 3.9 and I hadn't noticed that before. It also did not appear on Dr. T's look up reference he sent me. (???) Dd was given a steroid taper and the numbers came down but I didn't look at the T3.

What is the premise behind Plasmapheresis as a treatment? I don't see how getting rid of anti-bodies will help solve the problem unless what ever is producing the anti-bodies is broken like as an example dialysis when the kidney is broken. Perhaps the theory is to give the system a reset? I can certainly understand if the solution is to provide immediate relief from continuous raging like in our dd's case.

I've always been hesitate to say my dd has pandas/pans even though we recognized 7 of 7 clinical symptoms because until recently none of the tests run were conclusive or corroborated. My problem has always been that none of the doctors have been willing to make the diagnosis. Without really knowing about the professional community, I feel like the neurological community is fighting over definitions and getting credit for discovery because I had doctors say to me that they don't believe in pandas. My reaction is what the does that mean? I've received this attitude toward treating dd and can't understand other than to conclude that there is some sort of code taught to them that makes them think this way. I want to understand what the best options are for treating dd going forward and what has helped get the professionals get on the same page is keeping detailed records.

One thing I learned about dd's rage is focus. We found just giving her paper to tear helped. She has been in a rage and grabs on to something dangerous or breakable her grip is like a vice. She grabbed hold of her dog once and luckily we were able to get his leg out of that grip. Her brother got on the wrong side of her rage and was thrown across the room. Dd's dog is in another room under the bed at any sign of rage but the are good buddies. He helps her anxiety and gets her out of the house for walks. Rage doesn't know who you are. You have to become a mat (d) ador with focus on some tag else.