Tiffany Haney
If you suspect that your child may be suffering from PANS (Paediatric Autoimmune Neuropsychiatric Syndrome) or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), it is important to seek help as soon as possible. PANS/PANDAS is an episodic illness characterised by a sudden onset of OCD and/or severe eating restrictions, along with other cognitive, behavioural, or neurological symptoms. While the condition can be cured, it may require a multi-disciplinary approach and ongoing treatment. The first step is to contact your child's doctor or GP, who can refer you to a mental health therapist or paediatrician with experience in PANS/PANDAS. It may be helpful to take notes on your child's symptoms and provide this information to the doctor. Online resources and support groups can also provide valuable information and reassurance, and it is recommended that parents pursue treatment for their child as soon as possible.
| Characteristics | Values |
|---|---|
| First steps | Contact your GP or child's doctor right away. Take notes on your child's symptoms and any recent illnesses. |
| Diagnosis | Doctors will ask about your child's symptoms, perform an exam, and test for infections. |
| Treatment | Antibiotics are the primary treatment. Other treatments include steroids, non-steroidal anti-inflammatory drugs, and blood plasma exchange. Therapy is also recommended, including cognitive behavioral therapy and exposure and response prevention. |
| Support | Contact other families in similar positions, such as through the PANS PANDAS UK Support Group on Facebook. |
| Prognosis | PANS/PANDAS is curable but may require a multi-disciplinary approach. Symptoms may relapse or flare up, especially when the child is exposed to another virus or allergen. Most patients' symptoms eventually subside, and about 95% of children will outgrow PANS/PANDAS. |
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What You'll Learn
Visit your GP and ask for a referral to a paediatrician
If you suspect your child may have PANS or PANDAS, it is important to visit your GP and ask for a referral to a paediatrician. PANS/PANDAS is an episodic illness, meaning symptoms can disappear after an infection is treated, but they can return, known as a flare-up or relapse. Flare-ups are often triggered by exposure to another virus, strep throat, or environmental factors like mould or allergens. Symptoms may worsen with each episode and can last for months or even years. Therefore, it is crucial to seek medical help promptly.
When visiting your GP, consider taking someone else for moral support and to help take notes. It is helpful to make a note of your child's symptoms, recent illnesses, and any other relevant information. You can also print off the PANS PANDAS UK GP information leaflet and give it to your GP to ensure they are aware of PANS/PANDAS and its treatment. If your GP is unfamiliar with PANS/PANDAS, politely remind them that your child may have an immune-mediated disease and requires the expertise of a paediatrician or paediatric neurologist for diagnosis and treatment.
A paediatrician, ideally one with experience in PANS/PANDAS, should be consulted for ongoing treatment. This can be done privately or through the NHS. The paediatrician will conduct a thorough evaluation, including taking a detailed history of your child's symptoms, performing examinations, and ordering necessary tests. They may also recommend additional specialists, such as a paediatric neurologist, to ensure your child receives comprehensive care.
In addition to medical treatment, many PANS/PANDAS families find support and reassurance from connecting with other families in similar situations. Support groups, such as the PANS PANDAS UK Support Group on Facebook, provide a wealth of information and a sense of community. These groups can offer valuable insights and help you feel less alone in navigating your child's diagnosis and treatment journey.
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Take notes on your child's symptoms and any recent illnesses
PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly in young children, accompanied by other confusing and distressing symptoms. The symptoms of PANS can be frightening for both the child and their family, and getting the care and support they need can be challenging.
If you've noticed a marked change in your child after they've been ill, with symptoms that match those of PANS or PANDAS, the first step to getting help is to visit your GP and talk to them about the changes you've observed. It may be helpful to make notes about the symptoms and changes you've noticed, as well as any illnesses that occurred before these changes. That way, you can present your concerns clearly and concisely to the doctor.
PANS and PANDAS can manifest in various ways, and different people experience different combinations of symptoms, which may change over time. The main symptoms include new obsessive-compulsive behaviours, tics, and/or eating restrictions. Other secondary symptoms include anxiety, changes in mood, difficulties with toileting and sleep, sensory sensitivities, and behavioural regression.
Some of the more specific symptoms of PANS and PANDAS include:
- New and intense fears or concerns about things being clean, dirty, or in a specific order.
- Repeatedly asking a parent for reassurance.
- Engaging in compulsive rituals, such as repeatedly walking in and out of a doorway to get it "right."
- Sleep disturbances, bedwetting, and changes in urinary frequency or intensity.
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Antibiotics are the primary treatment
If you suspect your child has PANS or PANDAS, it is important to seek medical help. Antibiotics are the primary treatment for PANS/PANDAS, an acute-onset OCD condition in children. PANS/PANDAS is an "episodic illness", meaning symptoms can disappear for a while after an infection is treated but can return or relapse. This is known as a flare-up. Flare-ups can be triggered by exposure to another virus, strep throat, or environmental factors like mould or allergens.
Antibiotics are crucial in treating PANS/PANDAS, especially when a strep infection is detected. However, if a child does not test positive for strep, doctors may be reluctant to prescribe antibiotics. In such cases, parents often face challenges in finding effective treatments for their children's PANS symptoms. Antibiotic prophylaxis may also be used to prevent potential infections that could trigger a flare-up. Additionally, steroids can help reduce inflammation in the child's brain and alleviate symptoms.
For children who do not respond to standard treatments, intravenous immunoglobulin (IVIG) may be an option, although it is costly and typically not covered by insurance. Non-steroidal anti-inflammatory drugs (NSAIDs) are often prescribed due to their anti-inflammatory properties. Omega-3 fish oil supplements, probiotics, and vitamin D supplements may also help reduce inflammation and have a positive impact on the child's overall health.
While antibiotics are the primary treatment, a holistic approach can also be beneficial. Many parents explore functional medicine, dietary measures, and homeopathy. These alternative treatments can be used in conjunction with traditional medical approaches to provide comprehensive care for children with PANS/PANDAS.
It is important to note that PANS/PANDAS can be cured, but it may require a multi-disciplinary approach. With appropriate treatment and support, children can feel better and live full and fulfilling lives.
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Online support groups can help you feel less alone
If you or someone you know is suffering from PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), it's important to know that you are not alone. Online support groups can be a great source of comfort and provide valuable information and resources to help you navigate this challenging time.
One such group is the PANDAS Network, a national nonprofit organization dedicated to providing resources and support to families living with PANDAS/PANS/AE. They offer a wealth of information on their website, including how to recognize symptoms, find providers, and promote awareness. They also provide personal stories from other families affected by PANDAS/PANS, which can help you feel less isolated and provide hope for recovery.
In addition to the PANDAS Network, there are other online communities and forums dedicated to PANS support. These can be a great way to connect with others going through similar experiences and share information and advice. Online support groups can also provide a sense of anonymity, which may be especially important for those who feel uncomfortable discussing their experiences publicly.
Through these online communities, you can gain access to a network of people who understand what you're going through and can offer empathy and guidance. You can learn about different treatment options and how to navigate the challenges of living with PANS. Many groups also offer advice on insurance and financial matters, as treatments for PANS are often denied by health insurance companies, leading to high out-of-pocket costs.
Remember, you don't have to face this alone. Reaching out for support is a brave and important step in caring for yourself or your loved one. Online support groups can provide a sense of community and connection, helping you feel less isolated and more empowered on your journey towards healing.
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Therapy can help your child and guide parents
If you suspect your child may have PANS or PANDAS, it is important to visit your GP. Take notes on your child's symptoms and any recent illnesses, and consider printing off the PANS PANDAS UK GP information leaflet to give to your GP. While psycho-therapeutic interventions will not address the root cause of the symptoms, therapy can help your child and guide parents in several ways.
Therapy can help your child manage the symptoms of PANS or PANDAS. Cognitive Behavioural Therapy (CBT) is commonly used to treat OCD and other forms of severe anxiety that are associated with PANS or PANDAS. Exposure and Response Prevention (ERP) therapy is one technique used within CBT to reduce OCD symptoms. ERP therapy works by gradually exposing your child to the fears that trigger their OCD, while they learn to resist the urge to complete the compulsive rituals associated with OCD. For example, a therapy called habit reversal can help if a child has tics.
Therapists work closely with parents to coach them on ways to help their child's symptoms improve. They also guide parents on how to manage a child's stressful symptoms until they can be resolved. For example, parents can be advised on the best ways to comfort or soothe their child.
In addition to CBT, other treatments can be considered in conjunction with more traditional medical approaches. Many parents pursue more holistic treatments, such as functional medicine, dietary measures, and homeopathy. For example, non-steroidal anti-inflammatory drugs (NSAIDs) like Advil and Motrin are often given to patients for their anti-inflammatory properties. There are also some supplements that may have a positive effect on children with PANS, such as Omega 3 fish oil supplements, probiotics, and vitamin D supplements.
Finally, it can be very informative and reassuring for parents and carers to be in contact with other families in similar positions. Support groups, online forums, and regional support meetings can be excellent sources of information and support, helping you to feel less alone.
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Frequently asked questions
If you suspect your child may have PANS, it is important to contact your child's doctor or GP right away. It may be helpful to take notes on your child's symptoms and any recent illnesses. You can also print off the PANS PANDAS UK GP information leaflet and give a copy to your GP if they are not aware of PANS.
Treatment for PANS starts with medication to treat the infection. Antibiotics are the primary treatment for PANS, especially if a child has been found to have a strep infection. Other treatments include steroids, non-steroidal anti-inflammatory drugs (NSAIDs), and intravenous immunoglobulin (IVIG). Therapy is also an important part of treatment, specifically cognitive behavioural therapy for OCD.
Yes, there are support groups available for families dealing with PANS. The PANS PANDAS UK Support Group on Facebook is a forum where parents and carers can connect with others in similar positions and share information and support. There are also regular online and regional support meetings where you can meet other PANS parents and carers in your area.
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