What Are the Role of PANS and PANDAS Support Groups

Summary:  In this article post, you will learn about the benefits of joining such support groups and how they can help provide much needed relief during difficult times. We will also discuss what to look for in finding the right support group for your family’s needs, so that you can benefit from it in the most effective way possible.

Introduction

Living with a child who has been diagnosed with PANDAS or PANS can be an overwhelming experience. Parents often feel overwhelmed, helpless, and alone as they navigate this new path. Fortunately, there is help out there. Support groups for parents of children with PANDAS and PANS offer a place to share experiences and find comfort in knowing that you are not alone

What is PANDAS PANS?

PANDAS PANS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is a condition that can occur in children after they have had a strep infection, such as strep throat. Symptoms of PANDAS PANS can include:

-Anxiety

-Depression

- Obsessive-compulsive disorder (OCD)

-Trouble sleeping

-Irritability

-Aggression

-inattention

If your child has any of these symptoms and has also had a strep infection, it is important to talk to your doctor. PANDAS PANS is treated with antibiotics and sometimes with other medications. With treatment, most children get better.

Symptoms of PANDAS PANS

There are a few different ways that PANDAS PANS can manifest, and the most salient symptom is typically a sudden onset of obsessive-compulsive behaviors or tics. Other common symptoms include:

- Separation anxiety

- Generalized anxiety

- Bedwetting

- Urinary frequency or urgency

- Sleep disruptions

- Night terrors

- Refusal to eat specific foods

- Abrupt mood changes

- Irritability or rage

These symptoms can be incredibly disruptive to daily life, and often leave children feeling isolated and misunderstood. If your child is displaying any of these behaviors, it's important to seek out professional help. Support groups can also be a valuable resource for parents dealing with PANDAS PANS.

Diagnosis of PANDAS PANS

There is no one definitive test for diagnosing PANDAS or PANS. A diagnosis is made based on a combination of factors, including the child’s medical history, symptoms, and results of a physical examination and laboratory tests.

In general, to diagnose PANDAS, doctors look for:

- Sudden onset of obsessive-compulsive behaviors or tics (sudden, repetitive movements or vocalizations)

- Obsessive-compulsive behaviors or tics that are significantly more severe than usual

- Onset of symptoms after a strep infection

- Improvement in symptoms after treatment with antibiotics

To diagnose PANS, doctors look for:

- Persistent obsessive-compulsive behaviors or tics that are significantly more severe than usual

- Onset of symptoms after an infection (strep throat is the most common reported infection, but other infections have also been linked to PANS)

- Presence of at least two other neurological abnormalities, such as mood swings, Behavioral problems (ADHD), Separation anxiety, sensory abnormalities or sleep disturbances.

Treatment of PANDAS PANS

There is no one-size-fits-all answer to the question of how to best treat PANDAS PANS. However, there are a number of effective treatments that can be used to manage the symptoms of this condition.

One common treatment approach is the use of immunomodulatory therapies. These therapies work to modulate the immune system, which can help to reduce inflammation and improve symptoms. Common immunomodulatory therapies include steroids, intravenous immunoglobulin (IVIG), and plasma exchange.

Another treatment approach that may be used for PANDAS PANS is psychoeducation and behavior therapy. This type of therapy can help patients and their families to better understand the condition and learn how to cope with the symptoms. Behavior therapy may also be used to help treat some of the associated anxiety and OCD symptoms.

In some cases, medications may also be used to treat PANDAS PANS. Commonly used medications include antidepressants, antipsychotics, and mood stabilizers. These medications can help to improve mood and ease anxiety symptoms.

It is important to work with a medical team that is experienced in treating PANDAS PANS in order to develop an individualized treatment plan that meets your needs.

Support Groups for PANDAS PANS

If you or your child has been diagnosed with PANDAS or PANS, you are not alone. There are many support groups available to help families dealing with these conditions. Here are some of the most popular:

Mentoring program for Health coaches organization that provides support and information for families affected by PANDAS and PANS. They offer a variety of resources, including a support group network, educational materials, and financial assistance for families in need.

It is a leading resource for those with OCD and related disorders. They offer online and in-person support groups for people of all ages, as well as their families and friends. While not specifically geared towards PANDAS/PANS, many members of their communities have this diagnosis.

The network is another great resource for parents of children with PANDAS or PANS. We offer online support groups, educational materials, and an annual conference. Their goal is to provide emotional and practical support to families affected by these conditions.

Conclusion

PANDAS PANS Support Groups can be a great source of support and guidance for individuals and families dealing with this complex disorder. It is important to know that you are not alone, as there are many who have gone through similar experiences and understand the struggles associated with PANDAS/PANS. By connecting with others in a supportive environment, it can help provide comfort knowing that someone else understands your situation while giving valuable insight on how to cope better or manage symptoms. Be sure to do your research and find what works best for you when it comes to finding the right support group for you or your loved ones!