Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 Hi Christel, My son has had a facial tic since last October. Some days are worse than others but it is there every day. We think it may be parasite related as we treated for a parasite and it improved, but some of the herbs were anti-bacterial as well so I don't know. A couple of weeks off the parasite clense and the symptoms worsened again. We also started LDN in that time so not sure if we got a flare from immune system modulation? I would like to try OLE with him, what dose would be correct for a 40 pound boy? Do you use the liquid? If so, where do you buy it. How soon did you notice a difference once you started? thanks so much, > > you don't HAVE to elivated titers to strep. read up on PANDAS > PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as " Strep throat " and Scarlet Fever. > > The children usually have dramatic, " overnight " onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection. > > PANDAS is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and " attack " the heart valves, joints, and/or certain parts of the brain. This phenomenon is called " molecular mimicry " , which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain > > One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD > > clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS. > > Q. What are the diagnostic criteria for PANDAS? > > A. They are: > > 1.. Presence of Obsessive-compulsive disorder and/or a tic disorder > 2.. Pediatric onset of symptoms (age 3 years to puberty) > 3.. Episodic course of symptom severity > 4.. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) > 5.. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements) > Q. What is an episodic course of symptoms? > > A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD return just as suddenly and dramatically as they did previously. > > Q. Are there any other symptoms associated with PANDAS episodes? > > A. Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics: > 1.. ADHD symptoms (hyperactivity, inattention, fidgety) > 2.. Separation anxiety (Child is " clingy " and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.) > 3.. Mood changes (irritability, sadness, emotional lability) > 4.. Sleep disturbance > 5.. Night- time bed wetting and/or day- time urinary frequency > 6.. Fine/gross motor changes (e.g. changes in handwriting) > 7.. Joint pains > here is another list from another site > > Red flags > The biggest difference between regular OCD and PANDAS OCD is the sudden onset. OCD usually develops slowly over weeks, months or even years; however, PANDAS OCD seems to come out of the blue with parents saying one day their child woke up a different kid. There are also other symptoms that help differentiate the 2 types of OCD. PANDAS OCD is also characterized by: > > a.. Choreiform movements: involuntary or irregular writhing movements of the legs, arm or face > b.. Presence of tics and/or hyperactivity > c.. Irritability, temper tantrums, or mood lability > d.. Nighttime difficulties > e.. Severe nightmares and new bedtime rituals or fears > f.. Separation anxiety > g.. Age regression: going back to younger developmental stage > h.. New handwriting problems, loss of math skills, sensory sensitivities > > > Q. My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS? > > A. No. Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. In fact, the average grade-school student will have 2 - 3 strep. throat infections each year. PANDAS is considered when there is a very close relationship between the abrupt onset or worsening or OCD and/or tics, and a preceding strep. infection. If strep. is found in conjunction with two or three episodes of OCD/tics, then it may be that the child has PANDAS > > What to do if you suspect your child has PANDAS > > a.. Contact your pediatrician. Advocate for your child by being clear about what you want your doctor to do. In some cases, you may have to find a sympathetic doctor who is willing to learn about PANDAS. The PANDAS Clinic at NIMH may be willing to consult with doctors. > b.. Have your pediatrician do a throat culture of group A B- hemolytic strep. Ask that the specimen be cultured, not just the rapid test. > c.. Your doctor may also do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)). > d.. You and/or your doctor can get information and treatment guidelines from the National Institute of Mental Health (www.nih.gov); type in PANDAS to access the appropriate link. > e.. Contact the OC Foundation to help locate an expert in OCD in your area. > f.. Have your child retested if there is a resurgence in OCD symptoms. > yes my son and best friend both have PANDAS< my son had scarlet fever and strep throat and deteriorated what felt like over night almost 2 years ago, which we have then seen a pattern with 3 other episodes, which gives him the dx of PANDAS, he gets very OCD over letter and turns extreamly hyperlexic, his hand writting goes, he has melt downs over nothings, lots of tantrums, gets mean and will hurt his sisters for no reason ect. my aspie friend well get really depressed, and emotional, have melt downs, becomes unfunctionable, her immune system crashes and she will over night new allergies to the place she can bearly eat. (she is an adult and it looks a bit different) she was previously dxed with tourettes which I pushed her to get tested as I saw it come and go like my son with his PANDAS flares and sure enough she tested possitive, so now with treatment OLE (olive leaf extract) she is tic free as well. she has the history of tons of strep infection as a child and being on spectrum as well but wasn't caught till this last year. so her peices are coming together now. > > I hope this helps you some with examples of both a child and an adult, If I can help you futher please don't hesitate to contact me agian > > christel king > > Recovering from Autism is a marathon > NOT a sprint, but FULLY possible! > Read more about it on my BLOGs at > http://www.myspace.com/christelking > http://foggyrock.com/MyPage/recoveringwishes > > > What could this mean? Christel? > > > I was told that the peeling hands and feet are vit deficiences. > Someone posted it is celiac, but Matt was cleared for that. I am also > told that strep causes this as well as some other behaviors we are > seeing - the whoop whoop noise, the clacking of his teeth and the > blinking of his eyes and so on...bc these things are associated with > Tourettes which is set off in people by strep apparently. > > But he had no elevated titers for strep...anybodu. It is too weird...Di > > > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: 7/12/2008 4:31 PM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 we did pills 500 mgs or 410 mgs in 3 doses a day. we did the 410 when he was 40 pounds and the 500 mgs when he was 48 pounds. my adult aspie friend did the 500 mgs 3 times a day as well, think she went up to 4 a day at one point Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes What could this mean? Christel?> > > I was told that the peeling hands and feet are vit deficiences. > Someone posted it is celiac, but Matt was cleared for that. I am also > told that strep causes this as well as some other behaviors we are > seeing - the whoop whoop noise, the clacking of his teeth and the > blinking of his eyes and so on...bc these things are associated with > Tourettes which is set off in people by strep apparently.> > But he had no elevated titers for strep...anybodu. It is too weird...Di> > > > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: 7/12/2008 4:31 PM>No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.4.10/1550 - Release Date: 7/13/2008 5:58 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 Christel thanks! How soon did it start to work/ Was their a " healing regression " ? Was it a total of 410 mg or 410 mg times 3? so 1230 mg? sorry to sound so dense. Thanks, > > > > you don't HAVE to elivated titers to strep. read up on PANDAS > > PANDAS, is an abbreviation for Pediatric Autoimmune > Neuropsychiatric Disorders Associated with Streptococcal Infections. > The term is used to describe a subset of children who have Obsessive > Compulsive Disorder (OCD) and/or tic disorders such as Tourette's > Syndrome, and in whom symptoms worsen following strep. infections > such as " Strep throat " and Scarlet Fever. > > > > The children usually have dramatic, " overnight " onset of symptoms, > including motor or vocal tics, obsessions, and/or compulsions. In > addition to these symptoms, children may also become moody, > irritable or show concerns about separating from parents or loved > ones. This abrupt onset is generally preceeded by a Strep. throat > infection. > > > > PANDAS is similar to that of Rheumatic Fever, an autoimmune > disorder triggered by strep. throat infections. In every bacterial > infection, the body produces antibodies against the invading > bacteria, and the antibodies help eliminate the bacteria from the > body. However in Rheumatic Fever, the antibodies mistakenly > recognize and " attack " the heart valves, joints, and/or certain > parts of the brain. This phenomenon is called " molecular mimicry " , > which means that proteins on the cell wall of the strep. bacteria > are similar in some way to the proteins of the heart valve, joints, > or brain > > > > One part of the brain that is affected in PANDAS is the Basal > Ganglia, which is believed to be responsible for movement and > behavior. Thus, the antibodies interact with the brain to cause tics > and/or OCD > > > > clinicians use 5 diagnostic criteria for the diagnosis of PANDAS > (see below). At the present time the clinical features of the > illness are the only means of determining whether or not a child > might have PANDAS. > > > > Q. What are the diagnostic criteria for PANDAS? > > > > A. They are: > > > > 1.. Presence of Obsessive-compulsive disorder and/or a tic > disorder > > 2.. Pediatric onset of symptoms (age 3 years to puberty) > > 3.. Episodic course of symptom severity > > 4.. Association with group A Beta-hemolytic streptococcal > infection (a positive throat culture for strep. or history of > Scarlet Fever.) > > 5.. Association with neurological abnormalities (motoric > hyperactivity, or adventitious movements, such as choreiform > movements) > > Q. What is an episodic course of symptoms? > > > > A. Children with PANDAS seem to have dramatic ups and downs in > their OCD and/or tic severity. Tics or OCD which are almost always > present at a relatively consistent level do not represent an > episodic course. Many kids with OCD or tics have good days and bad > days, or even good weeks and bad weeks. However, patients with > PANDAS have a very sudden onset or worsening of their symptoms, > followed by a slow, gradual improvement. If they get another strep. > infection, their symptoms suddenly worsen again. The increased > symptom severity usually persists for at least several weeks, but > may last for several months or longer. The tics or OCD then seem to > gradually fade away, and the children often enjoy a few weeks or > several months without problems. When they have another strep. > throat infection the tics or OCD return just as suddenly and > dramatically as they did previously. > > > > Q. Are there any other symptoms associated with PANDAS episodes? > > > > A. Yes. Children with PANDAS often experience one or more of the > following symptoms in conjunction with their OCD and/or tics: > > 1.. ADHD symptoms (hyperactivity, inattention, fidgety) > > 2.. Separation anxiety (Child is " clingy " and has difficulty > separating from his/her caregivers. For example, the child may not > want to be in a different room in the house from his/her parents.) > > 3.. Mood changes (irritability, sadness, emotional lability) > > 4.. Sleep disturbance > > 5.. Night- time bed wetting and/or day- time urinary frequency > > 6.. Fine/gross motor changes (e.g. changes in handwriting) > > 7.. Joint pains > > here is another list from another site > > > > Red flags > > The biggest difference between regular OCD and PANDAS OCD is the > sudden onset. OCD usually develops slowly over weeks, months or even > years; however, PANDAS OCD seems to come out of the blue with > parents saying one day their child woke up a different kid. There > are also other symptoms that help differentiate the 2 types of OCD. > PANDAS OCD is also characterized by: > > > > a.. Choreiform movements: involuntary or irregular writhing > movements of the legs, arm or face > > b.. Presence of tics and/or hyperactivity > > c.. Irritability, temper tantrums, or mood lability > > d.. Nighttime difficulties > > e.. Severe nightmares and new bedtime rituals or fears > > f.. Separation anxiety > > g.. Age regression: going back to younger developmental stage > > h.. New handwriting problems, loss of math skills, sensory > sensitivities > > > > > > Q. My child has had strep. throat before, and he has tics and/or > OCD. Does that mean he has PANDAS? > > > > A. No. Many children have OCD and/or tics, and almost all school > aged children get strep. throat at some point in their lives. In > fact, the average grade-school student will have 2 - 3 strep. throat > infections each year. PANDAS is considered when there is a very > close relationship between the abrupt onset or worsening or OCD > and/or tics, and a preceding strep. infection. If strep. is found in > conjunction with two or three episodes of OCD/tics, then it may be > that the child has PANDAS > > > > What to do if you suspect your child has PANDAS > > > > a.. Contact your pediatrician. Advocate for your child by being > clear about what you want your doctor to do. In some cases, you may > have to find a sympathetic doctor who is willing to learn about > PANDAS. The PANDAS Clinic at NIMH may be willing to consult with > doctors. > > b.. Have your pediatrician do a throat culture of group A B- > hemolytic strep. Ask that the specimen be cultured, not just the > rapid test. > > c.. Your doctor may also do a blood test to assess elevated > streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers > (ASO)). > > d.. You and/or your doctor can get information and treatment > guidelines from the National Institute of Mental Health > (www.nih.gov); type in PANDAS to access the appropriate link. > > e.. Contact the OC Foundation to help locate an expert in OCD in > your area. > > f.. Have your child retested if there is a resurgence in OCD > symptoms. > > yes my son and best friend both have PANDAS< my son had scarlet > fever and strep throat and deteriorated what felt like over night > almost 2 years ago, which we have then seen a pattern with 3 other > episodes, which gives him the dx of PANDAS, he gets very OCD over > letter and turns extreamly hyperlexic, his hand writting goes, he > has melt downs over nothings, lots of tantrums, gets mean and will > hurt his sisters for no reason ect. my aspie friend well get really > depressed, and emotional, have melt downs, becomes unfunctionable, > her immune system crashes and she will over night new allergies to > the place she can bearly eat. (she is an adult and it looks a bit > different) she was previously dxed with tourettes which I pushed > her to get tested as I saw it come and go like my son with his > PANDAS flares and sure enough she tested possitive, so now with > treatment OLE (olive leaf extract) she is tic free as well. she has > the history of tons of strep infection as a child and being on > spectrum as well but wasn't caught till this last year. so her > peices are coming together now. > > > > I hope this helps you some with examples of both a child and an > adult, If I can help you futher please don't hesitate to contact me > agian > > > > christel king > > > > Recovering from Autism is a marathon > > NOT a sprint, but FULLY possible! > > Read more about it on my BLOGs at > > http://www.myspace.com/christelking > > http://foggyrock.com/MyPage/recoveringwishes > > > > > > What could this mean? Christel? > > > > > > I was told that the peeling hands and feet are vit deficiences. > > Someone posted it is celiac, but Matt was cleared for that. I am > also > > told that strep causes this as well as some other behaviors we > are > > seeing - the whoop whoop noise, the clacking of his teeth and > the > > blinking of his eyes and so on...bc these things are associated > with > > Tourettes which is set off in people by strep apparently. > > > > But he had no elevated titers for strep...anybodu. It is too > weird...Di > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: > 7/12/2008 4:31 PM > > > > > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.10/1550 - Release Date: 7/13/2008 5:58 PM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 yes 410 3 times a day. it depends on how bad the strep is and how long it's been there kinda like fighting yeast, the more you have to fight the longer it takes. we have found if we find it quickly and treat quickly it goes away quickly. we just had a PANDAS flare and got it in 5 days, were as before when we had it, it took about 2 months to get rid of it, we waisted alot of time doing z- pack to rounds that did nothing so it was there for over a month. Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwishes What could this mean? Christel?> > > > > > I was told that the peeling hands and feet are vit deficiences. > > Someone posted it is celiac, but Matt was cleared for that. I am > also > > told that strep causes this as well as some other behaviors we > are > > seeing - the whoop whoop noise, the clacking of his teeth and > the > > blinking of his eyes and so on...bc these things are associated > with > > Tourettes which is set off in people by strep apparently.> > > > But he had no elevated titers for strep...anybodu. It is too > weird...Di> > > > > > > > > > No virus found in this incoming message.> > Checked by AVG - http://www.avg.com > > Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: > 7/12/2008 4:31 PM> >> > > > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.10/1550 - Release Date: 7/13/2008 5:58 PM>No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.4.10/1550 - Release Date: 7/13/2008 5:58 PM Quote Link to comment Share on other sites More sharing options...
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