PANDAS/:tonsils and adenoid removal - this Friday

[Guest guest]

Ali-

How did you confirm your son was negative for PANDAS? I didn't think

there was a definitive test for this. It would be great if there is!

I'm starting to look into PANDAS as a cause for my son's sudden eye

blinking. He had scarlet fever (came down with it the week after we

started acyclovir - right when the eye blinking began.) I'm looking

for more information on this to go to the doctor with. He had no

explanation for the eye blinking and it is constant. Just so upsetting.

If anyone on this list has successfully treated for PANDAS, would love

to hear your stories about symptoms, dx and recovery.

Thanks!

>

> My son had out just his adenoids last year while on Valtrex and

Diflucan. He did very well with the surgery. Prior to the surgery,

we did extra glutathione to help him prepare. He stayed on his

medicine and took 2 days of a antibiotic prescribed by the ENT to help

with the healing.

>

> My son had a lot of strep infections but is negative for PANDAS.

>

> Hope this helps.

> Ali

>

[Guest guest]

,

My son is a PANDAS/PITAND kid. He is otherwise not on the spectrum

but my research to help him brought me to this group and the DAN!

protocol. This protocol turned him around and absolutely restored

him to a far greater degree than anything else we tried. Eye

blinking was one of his first symptoms and is now an early warning

sign which I address with antifungals and it gets things back under

control.

Antifungals really pulled the trigger on panic and anxiety.

P5P, L-tyrosine and pycnogenol helped with attention and focus.

OLE melted within 2 wks the horrible ocd that had ruled his life for

2 years.

I communicate with a group of PANDAS parents. Many have success with

antibiotic therapy but my son was a nonresponder. The above helped

him so much and improved his quality of life by 100%.

Gayle

> >

> > My son had out just his adenoids last year while on Valtrex and

> Diflucan. He did very well with the surgery. Prior to the

surgery,

> we did extra glutathione to help him prepare. He stayed on his

> medicine and took 2 days of a antibiotic prescribed by the ENT to

help

> with the healing.

> >

> > My son had a lot of strep infections but is negative for

PANDAS.

> >

> > Hope this helps.

> > Ali

> >

>

[Guest guest]

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:

Presence of Obsessive-compulsive disorder and/or a tic disorder Pediatric onset of symptoms (age 3 years to puberty) Episodic course of symptom severity Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) 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:

ADHD symptoms (hyperactivity, inattention, fidgety) 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.) Mood changes (irritability, sadness, emotional lability) Sleep disturbance Night- time bed wetting and/or day- time urinary frequency Fine/gross motor changes (e.g. changes in handwriting) Joint pains

here is another list from another site

Red flagsThe 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:

Choreiform movements: involuntary or irregular writhing movements of the legs, arm or face

Presence of tics and/or hyperactivity

Irritability, temper tantrums, or mood lability

Nighttime difficulties

Severe nightmares and new bedtime rituals or fears

Separation anxiety

Age regression: going back to younger developmental stage

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

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.

Have your pediatrician do a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

Your doctor may also do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)).

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.

Contact the OC Foundation to help locate an expert in OCD in your area.

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 marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

PANDAS/:tonsils and adenoid removal - this Friday

Ali-How did you confirm your son was negative for PANDAS? I didn't thinkthere was a definitive test for this. It would be great if there is!I'm starting to look into PANDAS as a cause for my son's sudden eyeblinking. He had scarlet fever (came down with it the week after westarted acyclovir - right when the eye blinking began.) I'm lookingfor more information on this to go to the doctor with. He had noexplanation for the eye blinking and it is constant. Just so upsetting.If anyone on this list has successfully treated for PANDAS, would loveto hear your stories about symptoms, dx and recovery.Thanks!>> My son had out just his adenoids last year while on Valtrex andDiflucan. He did very well with the surgery. Prior to the surgery,we did extra glutathione to help him prepare. He stayed on hismedicine and took 2 days of a antibiotic prescribed by the ENT to helpwith the healing.> > My son had a lot of strep infections but is negative for PANDAS. > > Hope this helps.> Ali>

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