4Nikki got a reaction from jenie_penny in Does PANDAS always have OCD and tics?
Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri.
Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms.
We think the underlying cause of antibody and protein build up in the Basal ganglia.
we did eventually get a pandas diagnosis in 2015.
4Nikki reacted to kimballot in Is it worth seeing a geneticist?
My son is 20 years old now and has struggled with PANS for most of his life due to immune deficiency and chronic sinusitis. Recently we began seeing a local immunologist who does lots of work with metabolic disorders, believing that mitochondrial dysfunction is the root of much immune dysfunction since we need mitochondria to form inmmune cells properly. He did extensive blood work, followed by a muscle biopsy, and then genetic testing. All tests found abnormalities that eventually led to discovering a genetic mutation in a gene that helps mitochondria to function properly. This really helped us to make sense of everything and he is now on mitochondrial supplements. He has only ben on for a month, but his immune numbers looked better than they ever have on his most recent bloodwork.
4Nikki got a reaction from Cind in Glutamate and Pandas
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.
4Nikki got a reaction from saidie10 in Has anyone repeated the Cunningham Panel on their child?
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.
4Nikki got a reaction from Gpookie in Stanford news article: Antibiotics have a role in PANS even with no infection
There is something wrong about that article.
4Nikki got a reaction from qannie47 in Wondering if anybody has any experience with this....
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.
4Nikki reacted to pr40 in Child in Psych ward need advice asap. please!
"I fully expect the behaviors to resurface once he is home."
After reading his case history, I too belive this to be the case. BUT you do have something to work with.
He seems to know how to control himself when he has to -- you could work on making that a habit. CBT might help in this case.
If it were my children, I would use the possibility of going back to the hospital as a stick.
I would also stay away from any psych drugs for as long as possible.
4Nikki got a reaction from putting together the piece in Child in Psych ward need advice asap. please!
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.
4Nikki reacted to LNN in I just really need some help/advice
Here are a few easy reads on methylation - http://www.easytolovebut.com/?p=2782 and http://autismnti.com/images/Website-_Yasko_Education.pdf
Take it slow and it eventually starts to make sense.
The first step is ordering a 23andMe kit (www.23andMe.com) for $99 and have her spit into a tube. A few weeks later, you'll have her genetic info and can start to figure out what supplements might help her and which ones would add to her struggles. As Rowing Mom says, I'm a bit of a methylation fanatic. It maks a night and day difference for my kids moods and has kept them off of medications. I'm not on the forum often anymore but PM me and I'll get an email of you have questions.
Rowing mom - I thought you were kicking your forum habit?! I'll send you a PM this afternoon so we can catch up
4Nikki got a reaction from DsMom in Cunningham Panel results help? Anti Tubulin means....?
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
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.
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.
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.
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.
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.
4Nikki reacted to Mom23boys in Anitbiotic/Augmentin - How long should treatment last?
There is a website actually created by top PANDAS doctors for doctors. There is an area you can request to become a member if you are a medical professional. If she is interested in learning about PANDAS this is a great place for her to start. There is also a helpful flowchart that goes through a standardized treatment protocol.
4Nikki reacted to LNN in Question about a consultation with Dr. Trifiletti
I believe there's a Panda-friendly doctor in the Charlotte area - you can check the thread "Doctors who've helped us" that's pinned at the top of the list of discussions. You may also want to look for an osteopath, who tend to be of the same mindset as naturopaths except that they have MD's and can prescribe antibiotics and other medications if needed, which a naturopath can't.
The tests you describe are these:
1. ASO and Anti-DNase B antibody titers
Here's Quest Diagnostic's descriptions that you can print out for a doctor: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=265 and http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=256
2. Mycoplasma pneumonia Quest info: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34127 or this test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=15498
3. Anti-Roseola - couldn't find info on that one.
4. Mono - is caused by the Epstein-Bass Virus (EBV). The Quest test is: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6421 The problem with this test is that once you've had the virus, certain markers will show positive for life, so it doesn't prove there's an active infection. 95% of us have had EBV at some point in our lives, so this isn't a great test unless you get a positive on the marker that shows early infection (IgM). So you might be better with this one that looks for DNA of the virus: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34179
5. Coxsackie - Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7656
6. Lyme - the test Dr T or most any other doctor you might see locally is pretty useless because the widely used test doesn't look for the two markers that are unique to lyme. The lab most of us here have used for Lyme is from Igenex. You may have a hard time getting a doctor to sign the order form, but it can be signed by anyone with who can call themselves DR - a chiropractor, a naturopath (not sure about a dentist). It won't be covered by insurance and is $200 but you can submit your own insurance claim and might get reimbursed at the out-of-network rate (but you'd have to pay up front). Dr T feels Lyme is only present in about 1% of Pandas kids, which anecdotally from the moms on this forum, is simply untrue. At least a third of the parents I've met on the forum have found lyme to be a factor. You may want to list your daughter's symptoms, but if they include brain fog, rages, muscle or joint pain, frequently swollen lymph glands, vision issues or light/sound sensitivity or other things that don't appear on NIMH's list of traditional Pandas symptoms, then Lyme may be worth considering. If you decide to test, the test I'd start with is Basic Panel 4090 http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf and you can find additional info at www.igenex.com
7-8 - Thyroid Panel - this will screen for several thyroid measurements. Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7444
For help understanding thyroid tests an symptoms, you can start with www.stopthethyroidmadness.com The owner of the site is a bit angry and definitely has a bias, but it's a good place to get a lot of information from one place.
9. Lupus - Some parents have had this test and seen results that were alarming, yet their kids didn't have lupus. Pandas can trigger some of the markers seen in lupus. Personally, I'd only test if your daughter had any lupus symptoms. However, lupus is a serious disease, so depending on your financial and insurance situation, you may decide to test.
10. B12/Folate - not sure if this means a blood test to check B12 and folate levels. It's not a bad measurement to have provided you work with a doctor who's willing to do follow-up testing and knows how to treat any abnormal results, which would indicate one roadblock in methylation. The quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7065 If you get an abnormal result, you can post in a new thread and some of us can help you with follow up suggestions.
11. Pneumoccocal titers - this tests the immune response to the pneumonia vaccine your child probably received as a toddler. It can be used to see if the immune system responded correctly and if the vaccine provided some immunity. if your child doesn't mount a robust response, then you can re-administer the vaccine, run the titer test a second time and possibly build a case for insurance to pay for IVIG, arguing that your child is immune-deficient. The problem is that it requires re-vaccination, which does carry some risk for a flare with some Pandas kids, particularly if they have some current or chronic infection. For me, this test didn't give particularly helpful info for the cost. But again, depends on your situation. The Quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19564 if your child had the vaccine against 14 pneumonia strains or http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19563 if your child is older and only had the vaccine against 7 strains.
I list the Quest links because Quest is a national lab. But you don't have to use them. Labcorp and regional labs would have equivalent tests and you could print these links out and let your doctor order from the lab s/he prefers.
If you do end up having to go to a different doctor, they may or may not be willing to order all these tests and you may or may not be able to afford them all at one time, depending on your insurance. So my personal opinion on which ones I'd do first goes like this: 1, 2, 6, 10, 5, 4, 7/8, 3, 9, 11 But I have no medical background and don't mean this as medical advice. Just the opinion of a mom who's spent too much time on this forum.
You may want to post your daughter's primary symptoms, her age and how long things haven't been quite right. Sometimes, people can brainstorm and share their own experiences with similar issues. And don't feel bad about diets - we could only survive 9 days of gluten free, GAPS would never fly here either.
4Nikki reacted to 4Nikki in Ethical responsibility to treat
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.
4Nikki got a reaction from momofadult in Ethical responsibility to treat
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."
4Nikki got a reaction from momslove in steroid burst vs. steroid taper
Well... aren't kinda of the same thing? A Steriod Treatment. One is the same dosage over a period of time, while the other is a dosage that is reduced over a period of time. The difference is one is more of a abrupt stop while the other gradual stop to the system. I would think it just matter how sensitive your child is to receiving.
4Nikki reacted to rowingmom in Violent rages and ODD
I have to agree with several posts here. Bartonella is notorious for causing behavioural problems, especially raging. Clindamycin alone will not completely address bartonella infection.
Fortunately for us, DD13's rages were never directed at us, but it is still upsetting to see your child attacking herself and her surroundings. Her rages subsided with treatment for bartonella. The addition of herbs for babesia (which would also address any other unrecognized protozoan infections) improved her outlook as well. Happy, helpful, patient, rarely frustrated, diligent worker at school.
If you had told me 3 years ago that bacterial infections were so utterly responsible for DD's psychiatric issues I would never have believed.
4Nikki got a reaction from hkp901 in New to this...
Ask the Lab, if they have home service or if there is someone is doing home service in your area. We have found that many doctors actually order home service for patients that are older or have mobility issues. Before we moved to Northern Washington we found one oof the technicians would come on a saturday and charged $60
4Nikki got a reaction from MomWithOCDSon in Anyone watch 2020
Here's a link to very interesting link about glutimate.
And what sounds like risky terrain for drugs, but also very interesting about NMDA receptor
This may not be exactly what our kids suffer from but i think it has some insight s.
4Nikki got a reaction from nicklemama in Ped won't test for strep
Since when is it bad medicine to test for a suspected infection? I would ask the doctor to refuse to run the test in writing. Perhaps it would get her to think a little more about what she is telling her nurse to say to you.
Process of elimination is not bad medicine or bad troubleshooting. It helps to narrow down the suspected culprates. If the doctors knew everything on exactly how the body worked they wouldn't have to guess. Doctor's that claim to know everything are either fooling themselves or are trying to fool you.
DD was experiencing a series of bad flares, it was the first time we noticed her throat, and it was inflamed, we went to the doctors office the next day and her throat was no longer inflamed but insisted on a titer test which came back positive. I don't know if DD has PANDAS/PANS and hasn't been confirmed nor has it been taken out of the diagnosis pool. I don't care what the illness is called, I only care that it can be treated to help DD.
4Nikki reacted to Chemar in Dr.an Extreme Disappointment!
that is such a gracious response from you....thank you.
I am personally appalled that health care workers would ridicule a child under any circumstances.
And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho.
Kudos to you again for taking the high road here.
And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here.
Feel free to message me if you would like it re-opened.
4Nikki got a reaction from frikfrak in Methylation for Dummies
I have no idea if this helps because the links have all this stuff I've not see before so I did a look up.
Methylation Made Easy Part 1 of 4
Methylation Made Easy Part 2 of 4
Methylation Made Easy Part 3 of 4
Methylation Made Easy Part 4 of 4