This site has lots of info. http://www.adhd.com.au/PANDAS.htm
DD was diagnosed with ADHD before the Neuropsych even suggested PANDAS. She does not have tics, or OCD, and I firmly believe her ADHD was caused by the PANDAS. She had no symptoms until age 5
HI, and welcome!
Is his ADHD caused by PANDAS? MY 11yo has ADHD/innattentive as a result of PANDAS. It is really alot more common than you think.
Hi and welcome!
Sounds like you're right on top of all this. Good for you!
Believe me, your frustration and stress is felt by us all. Feel free to flood away! .
Thank you for the warm welcome and kind words.
edbson~ I am not sure if PANDAS is what brought on the ADHD or if he always had it lingering and the PANDAS episode brought it to the forefront. We did agree to have his tonsils and anoids removed after a sleep study and much thought. He hasn't had an episode since. As you already know not enough doctors know enough about PANDAS imo and aren't willing to help connect the dots. I would love any info you might have on the link between PANDAS and ADHD/innattentive type or any advice you might have.
Thank you again~
For parents unfamiliar with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), research indicates the presence of Obsessvie Compulsive Disorder and/or tic disorder according to the National Institute of Mental Health. According to the research, PANDAS can present some symptoms that mimic ADHD but I havent found any substantial research indicating that it causes ADHD. The data collected talks about OCD and tic disorder being linked to PANDAS. Again, the research indicates that the child may have some symptoms that mimic ADHD. Below is more information from the National Institute of Mental Health.
Q. What are the diagnostic criteria for PANDAS?
A. They are:
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:
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.
Q. Could an adult have PANDAS?
A. No. By definition, PANDAS is a pediatric disorder. It is possible that adolescents and adults may have immune mediated OCD, but this is not known. The research studies at the NIMH are restricted to children.
Q. My child has PANDAS. Should he have his tonsils removed?
A. The NIH does not recommend tonsillectomies for children with PANDAS, as there is no evidence that they are helpful. If a tonsillectomy is recommended because of frequent episodes of tonsillitis, it would be useful to discuss the pros and cons of the procedure with your child’s doctor, because of the role that the tonsils play in fighting strep. infections.
Q. What exactly is an anti-streptococcal antibody titer?
A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse-B) titer, which rises 6-8 weeks after a strep. infection.
Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?
A. An elevated anti-strep. titer (such as ASO or AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.
Q. When is a strep. titer considered to be abnormal, or "elevated"?
A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers.
It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)
Q. What are the treatment options for children with PANDAS?
A. The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep. triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child.
Children with strep. triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child’s primary physician can help you decide which type of specialist your child may need to see to receive these treatments
I just wanted to introduce myself so when I start flooding the board with questions you know who I am.
I am a sahm of 4 children. My 3rd Child who is 7 years old is diagnosed ADHD/ODB. He was diagnosed over a year ago after a scary summer with PANDAS. He started taking Ritalin and then moved on to Concerta with a 5mg ritalin *booster* in the am.
Trey, my son, is the sweetest, kindest, never disturbs the class kind of child. He just can't do his work. He is falling furthur and furthur behind. It doesn't help that his oppositional defiant behavior happens in the evenings at home when I could be trying to help him with school work.
We just moved cross country and are waiting for an appointment with a new doctor with my hope of possibly changing his meds, Vyvance, seems to have a lot of promise.
I am worn out and that is why I finally sought out a message board. I am not giving 100% to my other 3 children and I feel like I am failing Trey too. I know these feeling come from frustration but everyday the struggle becomes harder for me and my husband.
I look forward to getting to know and learning from all of you.