mkur

It sure would nice to have additional tests to compare with. Hopefully Dr C will be able to do some follow ups to help with her research.

http://www.sciencedaily.com/releases/2012/03/120302083224.htm My ds's mri's and eeg's were normal. I wonder about this machine. Anyone done this?

So Sorry - don't waste your time and money trying to change these dr's minds. You have to follow your gut.

So Sorry - don't waste your time and money trying to change these dr's minds. You have to follow your gut.

Happy Birthday!!!! I love to hear good news - makes my day. Thanks for all the posts and info - it is really appreciated.

Thanks for bring this up - this will keep me busy for a while - very interesting

"mkur---why are you happy about no mention of tonsils? curious...." Because they did not recommend removing tonsils before and this stmt made it impossible for me to have my ds's removed. This has been debated many times on this forum example: http://www.latitudes.org/forums/index.php?showtopic=4524

I hope the sinuses are an easy fix and the answer. It is so stressful not knowing. Hang in there.

What if the boys fell out early - because boys are more immature and impulsive - they were already diagnosed as ADD, ADHD, Tourettes+OCD+ADHD, BP, seizures, etc so any new symptoms would be ignored. What if the boys and girls whose immune systems only needed 2 hits of strep already fell out and these girls needed 2 hits of strep plus mono or myco. What are the percentages of girls and boys labeled sp.ed. at this school? Just a thought...

I might start to feel guilty about all the bad things I've said about Harvard. Dr. Michael Jenike sounds too good to be true. I really liked his response to the white pages - asking the doctors to treat these kids now. We'll have to wait and see if things change.

bump and THANKS!!! for all your personal efforts and for everybody else involved.

"Because it is so difficult to demonstrate the relationship between the child's OCD/tic symptoms and strep infections at the first onset of symptoms, clinicians and researchers agreed to focus their attention on the unique features of the clinical presentation of PANDAS, rather than on the role of strep infections, and developed criteria for PANS – Pediatric Autoimmune Neuropsychiatric Syndrome." This wasn't my child's problem but I am so glad to see this. I also noticed that they don't mention tonsils - awesome.

http://abcnews.go.com/Nightline/ They presented all 3 diff points of view equally. Now we wait and see if abx help. I really have a problem treating something chemically when you don't understand the exact process that is happening in the brain and I'm not talking about abx.

One more then I'm done. If they find the answer please post because my son was a long sleeper - 12 hours - and I have looked and looked for an answer. http://chronicfatigue.about.com/od/cfsglossary/g/hpa_axis.htm "The hypothalamic-pituitary-adrenal axis is a complex set of interactions between the hypothalamus (a part of the brain), the pituitary gland (also part of the brain) and the adrenal or suprarenal glands (at the top of each kidney.) The HPA axis helps regulate things such as your temperature, digestion, immune system, mood, sexuality and energy usage. It's also a major part of the system that controls your reaction to stress, trauma and injury. Research links fibromyalgia and chronic fatigue syndrome with abnormalities in genes involved in the HPA axis. (Primarily the hypothalamus in fibromyalgia and primarily the adrenals in chronic fatigue syndrome.) The HPA axis also is involved in anxiety disorder, bipolar disorder, post-traumatic stress disorder, clinical depression, burnout and irritable bowel syndrome. Also Known As: hypothalamic-pituitary-adrenal axis"

hair loss - my son would pull his hair out at night while sleeping a/o going to sleep

Other viruses to consider http://en.wikipedia.org/wiki/Alternative_names_for_chronic_fatigue_syndrome "Post-viral fatigue syndrome The World Health Organization's ICD-10 classification system refers to CFS as post-viral fatigue syndrome (PVFS), based on the hypothesis that viruses can trigger chronic fatigue illnesses. After considerable research in this area, certain viruses have been implicated "as one of many possible precipitating and eventually perpetuating factors."[27] Studies of chronic fatigue syndrome have reported increased rates of infection in subsets of patients with, among others, HHV-6,[28][29] HHV-7,[30] CMV, Epstein Barr,[31] enteroviruses,[32] and two retroviruses: an unnamed HTLV-II-like retrovirus,[33] and XMRV.[34] The "Oxford 1991" diagnostic criteria for CFS refer to a subtype of CFS called post-infectious fatigue syndrome (PIFS), which is broader than PVFS since it can include any infection, not just viral infections.[35]"

I saw this article and was wondering if PANDAS is a group 2 paraneoplastic neurologic disorder. Another new medical word for me. CURRENT TREATMENT OPTIONS IN NEUROLOGY Volume 12, Number 3, 212-230, DOI: 10.1007/s11940-010-0066-9 NEUROIMMUNOLOGY Treatment of Paraneoplastic Neurologic Disorders John E. Greenlee Abstract Paraneoplastic neurologic disorders are rare, autoimmune disorders, which can be broken down into two groups: those in which antibody response is directed against intracellular neuronal or neuroglial proteins (Group 1) and those in which the immune response is directed against antigens within or subjacent to the neuronal cell membrane (Group 2). In both groups, detection and treatment of the underlying neoplasm is critical and carries the best chance of clinical stabilization or remission. Syndromes in Group 2 frequently respond to therapy. This may involve corticosteroids, plasma exchange (PE), or intravenous immunoglobulin G (IgG), depending on the specific paraneoplastic syndrome. Cyclophosphamide or rituximab may be helpful in patients who fail to stabilize or improve on less aggressive therapies. Treatment of syndromes in Group 1 is far more difficult, and proven treatment strategies do not exist. Younger men (< 40 years of age) with limbic or brainstem syndromes, testicular or germ cell tumors, and anti-Ma2 antibodies may respond to specific tumor treatment together with immunotherapy. Patients with paraneoplastic syndromes and anti-Ri antibodies may respond to corticosteroids and/or cyclophosphamide. Evidence-based treatment guidelines do not exist for patients with other central paraneoplastic syndromes such as cerebellar degeneration or encephalomyeloneuritis. Approaches to therapy, apart from treating the underlying tumor, are thus speculative. In patients with rapidly progressive symptoms classically suggestive of a paraneoplastic neurologic syndrome, time is of the essence in arresting neurologic deterioration. Clinical improvement in patients with longstanding symptoms is unlikely. At the outset, one should move rapidly to define the antibody response involved, as this may also assist tumor diagnosis. Treatment may include prednisone, intravenous IgG, and cyclophosphamide; rituximab plus prednisone may be an alternative, either initially or in the face of continued disease progression despite treatment with intravenous IgG or cyclophosphamide. Although PE is of questionable benefit, a single cycle of PE may be considered before other treatment, to achieve rapid lowering of circulating paraneoplastic autoantibodies.

You do have a way with words. Very nicely stated. I hate the emotional rollercoaster. Please let me off. I'll be good.

My son has had 3 MRIs - all normal - except the 2nd one showed sinus problems. You will have to ask them to check the sinuses beforehand - not done automatically.

You make me SMILE....

I hope these parents find an answer. I feel their pain. Been there. We were told it was "stress" and were referred and referred and referred. Still don't have an answer for the "seizures". These girls because they are older (know their bodies and can express themselves) will have a better chance of getting treatment then the younger kids (DS was 7). The doctor's can't use the "dumb parents and smart children" excuse. Wasn't pandas defined to describe a large(?) outbreak of similar problems in the 1990's?

http://www.sciencedaily.com/releases/2012/01/120125132608.htm "The researchers showed that when GHSR1a and DRD2 were coexpressed, the receptors physically interacted with one another. Further, the GHSR1a:DRD2 complex was present in native hypothalamic neurons that regulate appetite. When mice were treated with a molecule (cabergoline) that selectively activates DRD2, they exhibited anorexia. Interestingly, the cabergoline-stimulated anorexia did not require ghrelin but was dependent on GHSR1a and the GHSR1a:DRD2 interaction. These findings suggest that in neurons expressing both GHSR1a and DRD2, GHSR1a alters classical DRD2 dopamine signaling." Does anyone know if the hypothalamus and pandas has been studied? Does this type of inflammation show up in mri or cat scans? Is this the same D2 measured by cunningham?

Imipramine is prescribed for urinary problems and this article links it with glutamate: http://www.ncbi.nlm.nih.gov/pubmed/11036201 and this other article links zinc with glutamate: http://www.ncbi.nlm.nih.gov/pubmed/11370292 I have never had my son's zinc levels tested. He has had low iron levels in the past. I know zinc and copper are connected and I am now trying to lower his copper intake (watching the supplements levels). Copper is the problem with Wilson's Disease which sometimes doesn't show up until adulthood. Wilson's can cause tremors, seizures and other neuro problems. My son has a (seizure/movement disorder/tics/panic attack/you can see it/don't care what you call it/just fix it). There are lots of articles linking glutamate and seizures. Thanks for posting - Your the BEST!! - I love all this info - keeps me busy - keeps me hoping.

You were very,very ... lucky to be in the right place at the right time. My son got sick Nov 97 - missed a week of school and started having behavior changes and seizures the next week. I took him to the doctors (many diff kinds looking for an answer and was referred and referred and referred). Sept 98, I made an appt with a new psy (didn't take insurance and paid out of pocket). This doctor was trained at the NIH and knew about PANDAS. He was told to treat like TS, OCD and ADHD. This means meds and more meds to treat the side effects - no abx. My son was on 6 meds just so he could do school. I was told to keep him in school because he needed the social experience. BIG MISTAKE. My son was gifted in math (accepted into g/t program) and is now a high school dropout. He had the high titers and could not get help. I started to look into autism info jan 2010 and found the autismone website about pandas and information about the book saving sammy. I read the book and cried for 2 months. Mar 2010 I had appt with dr b for june. He was never treated for pandas until then and not because we waited. I repeat "you were very, very ... lucky."

Love to hear good news. I hope you stay healthy and are too busy to visit this site daily. Enjoy your life.