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jferinga

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Posts posted by jferinga

  1. There are pro's and con's to what the school psychologist does. There should be an educational componenet to the evaluation which should include the basic battery of assessments from the, or extended battery, Woodcock Johnson III, or an equivalent. Keep in mind, if you do not have a formal diagnosis of a disability that fits into those defined by IDEA or fits as an "other health impairment" the school psychologist will assess and placement will be determined based on the disability identified by the psychologist. Schools, in my opinion, are not equipped to address the severity of behaviors I have read about and seen in our own child except by allowing breaks, flexibile grading, changes in environment, lessening the work load, etc. If you disagree with the school's evaluation and offer of FAPE you can always file for due process. If you file for due process you need to keep in mind that the goal is for educational progress. Educational progress can be documented in many different ways. I have a set of questions used by administrative law judges in California whcih I will email if I can find them. When educaitonal progress is not occuring typically a change in services or placement may be necessary. For example: more counseling, cognitive behavioral therapy, fewer class, or change of placement to a more restrictive setting. A more restrictive setting may be a non-public school (NPS) or a residential facility. You can also ask for Home Hospital. This is where a child is too sick to go to school and the school district will send a teacher to your home to help maintain learning. Side note: you may be able to get disability to care for your son due to the severity and focus on finding treatment.

     

    I have mentioned PANDAS to many people. Most question how can an infection cause these sypmtoms, some do not believe it (including a couple of doctors), nurses who complain that people will not want more antibiotics, and those who say it makes sense. The issue we encountered was getting the doctors to prescribe antibiotics.

     

    On a proactive note though. Use the school to document the decline in math and handwriting. Have the school "track" by tally sheets how often during the day he exhibits the specific behaviors. This data is useful when you determine the efficacy of any treatment from the doctor.

     

    Our best support came from a child psychologist who was open and did her own research about PANDAS and PANS. She believes it to be possible and stated that treatment woudl be hard in an HMO setting since they are bound by policies. We just read the book Saving Sammy and are buying copies for the psychologist and pediatrician and are downloading YouTube videos that we feel are worth watching to give the doctors on disk to watch.

     

    Feel free to email any questions.

  2. We started a couple threads previously. Our daughter had an acute onset November 9, 2013. Symptoms were minor for several days and peaked on November 14, 2013. The acute onset included involuntary motor movements and hopping/skipping between steps (complex motor tics). So many more symptoms became present through Novemeber 14.

     

    Our pediatrician made the referral to neurology. The neurologist stated that PANDAS and PANS is theory so we started hunting for doctors and new insurance. Since I work with kids with psychiatric disorder and the symptoms appear to be more psychiatric in nature I decided to talk with a psychiatrist. The psychiatrist in our insurance group agreed that our child displayed all the symptoms of PANS and or PANDAS. The pediatrician was still clueless how to treat this since she needs an infection to begin antibiotics.

     

    On November 26 we were notified by teh National Institute of Mental Health that our child could participate in a study. It turns out the NIMH is doing a complete medical evaluation to diagnose and check for known PANDAS/PANS triggers and other neurological/auto-immune disorders. We will be coming home with a treatment plan for our child. We understand treatment may be made for some things and not others.

     

    Mom was in the pediatrician's office at the time I was notified. A doctor at the NIMH called the pediatrician; who flat refused to treat with antibiotics, and discussed beginning antibiotics. The pediatrician immediately prescribed a daily dose of 2000 mg of Amoxicillin (1000 mg 2 times per day with a body weight of 45 lbs.

     

    When we return I will post a list of all tests and or procedures with a reason why they were performed. I hope this information will help everyone else who is struggling with this.

  3. Keep fighting. Our pediatrition was useless initially and the jury is still out about long term. We went to a psychiatrist who agreeed with us about PANDAS and PANS. We have kept video's of her behaviors and involuntary motor movements and a diary which I beleive helped. We managed to get in touch with Dr. Swedo's team at the National Institute of Mental Health. After our pediatritian spoke with a doctor at the NIMH she immediately prescribed antibiotics with a very high dosage for 10 days; 2000 mg per day! Message me and I will point you in any direction I can.

  4. How did your child do with the antibiotics in relation to alleviating the symptoms? Our daughter had an acute onset less than -days ago. I managed to get our daughter accepted into a study on PANDAS. Our doctor refused to prescribe antibiotics until she talked with a doctor from the program. The dosage is 2000 mg per day which is extremely high for her size. I am curious since you mentioned similar symptoms than our child.

  5. I am very familiar with IEPs. An IEP is typically for a child who has a qualifying disability. The law lists what are qualifying disabilitys as described in the Individual with Disabilities Act (IDEA). Keep in mind operatively this means a "recognized" disability and that the disability must adversly affect the child's educational performance. I have encountered children who have a disability which is not adversly affecting their educational performance and thusj they have no IEP.

     

    According to IDEA the following are qualifying disabilities: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment.

     

    PANDAS and PANS are not listed as a qualifying disability and I would be highly suspicious that PANDAS is the reason for the IEP. The symptoms associated with PANDAS may fall under several qualifying disabilities however. Prior to the IEP there is complete process the school district will follow. One part of the process is completing a psychoeducational evaluation. This evaluation is conducted by a school district psychologist with input from each teacher, a parent, and opthers who may be in contact with the child. Typically the school psychologist will list recent behavioral and educational problems. The school psychologist will also use protocals to clinically measure behaviors. Should the child not qualify for an IEP the school district may have a 504 plan for the child. The 504 plan will typically provide accomodations given to the student.

     

    First find out what the qualifying disability is. The second problem you have is that the treatment options listed for PANDAS like antibiotics will not be provided by a school district. You may want to research the qualifying disability in conjunction with effective treatments for the associoated symptoms of PANDAS. Most of the symptoms of PANDAS can be addressed through accomodations. I did read somewhere, I'm looking for the citation and research, that cognitive behavior therapy (CBT) works well with some of the symptoms you may see in obsessive compulsive disorder.

     

    Prior to the IEP ask for a copy of the psychoeducational evaluation and a draft copy of the educational and behavioral goals (or the entire iep if they will provide it). If the district says they cannot write them in advance let them know they can write "draft" on the IEP so it does not appear that they are predetermining services, placement, goals etc. Ask questions to understand the nature of the IEP referral. If the nature of the IEP is due to behaviors ask to see the data. There will be a "trigger" typically. If behaviors are very servere and pervasive there will be a behavior support plan where they will teach your child a functionally equivalent replacement behavior. Given the ongoing issues of PANDAS you may or may not want that.

     

    PANDAS appears to be triggered by an infection and or virus. The manifestation of symptoms indicates a possible psychiatric problem. Many of the PANDAS symptoms are listed in the DSM IV as conditions of a psychiatric condition. There are research based treatments which are effective for one disorder and not a different one. For example bi-polar and ADD/ADHD have similar symptoms and childhood onset bi-polar may present as ADD or ADHD. The treatments for the two can be very different.

     

    I am not a doctor nor a psychologist. I have had the pleasure of working with kids with disabilities and reading several clinitians manuals regarding disabilities, treatment plans, behavioral interventions etc. I see PANDAS as causing issues since there may be an underlying medical condition like Lyme Disease or a strep infection which school districs will not treat for. School districts will though provide services to address the symptoms, often times displayed as behaviors, which I could see as masking the symptoms of the underlying condition. Again from what I have read one treatment of antibiotics, IVIG or plasma exchange (as reported by others) may alleviate symptoms for one week, months, years, or permanently. If the child hides the symptoms then you may not know when a future onset occurs since the child is compensating for them.

  6. Hi FL Mom,

     

    We understand the frustration. Our pediatrition would not prescribe antibiotics. The neurologist she referred us to called PANDAS and PANS "theory". Our acute onset was less than 30-days ago. We were able to get our pediatrition to consult with another docter. After a 15-minute conversation our pediatrition prescribed a 10-day supply of antibiotics. The dosage shocked me. She is getting 1000 mg every 12 hours and weighs 45 lbs. We are hoping this will help.

  7. What are HERX?

     

    Our daughter recently developed a tic disorder and OCD behaviors. The neuologist would only acknowledge PANDAS, PANS, CANS, PITAND as "a theory". It has been a week since the initial onset and symptoms appear to be leveling off. There seems to be conflicting reports from parents about treatments being successful and or unsuccessful.

     

    My reading has indicated that there needs to be a treatment for any active infections until eliminated with antibiotics, then followed by prophylaxis antibiotic treatments to prevent reinfection. Prophylaxis antibiotic treatment are for prevention of new infections not treatment of an active infection. After this there seems to be deviation in the literature. I have read there are vitimin supplements prescribed, natural antivirals/antibacterials used, IVIG treatments, cognitive behavioral therapy (CBT), and medication.

     

    So now for my five questions. How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?

  8. Our daughter recently developed a tic disorder and OCD behaviors. The neuologist would only acknowledge PANDAS, PANS, CANS, PITAND as "a theory". It has been a week since the initial onset and symptoms appear to be leveling off. There seems to be conflicting reports from parents about treatments being successful and or unsuccessful.

     

    My reading has indicated that there needs to be a treatment for any active infections until eliminated with antibiotics, then followed by prophylaxis antibiotic treatments to prevent reinfection. Prophylaxis antibiotic treatment are for prevention of new infections not treatment of an active infection. After this there seems to be deviation in the literature. I have read there are vitimin supplements prescribed, natural antivirals/antibacterials used, IVIG treatments, cognitive behavioral therapy (CBT), and medication.

     

    So now for my five questions. How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?

  9. Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms.

     

    In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS.

     

    Has anyone familiar with PANDAS found any other triggers, infetions or viruses, besides strep?

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